wirry1422
08-18-2005, 05:39 PM
I just wanted to update everyone who has had an experience in the continuing saga of Oxycontin brand from Purdue and Oxycodone ER generic from Endo. I spoke to my doctor at my last appointment and I informed him that last month, the pharmacist had dispensed the oxycodone ER from Endo. I told him that the pain relief is noticeably different (at least a 25% increase in pain) and I have also experienced more nausea since taking the generic oxy. The doctor appologized for my experience and said I am no less then his 11th patient to compain about the ineffectiveness of the generic oxy within the past two months. He told me that he has reviewed the package insert from Endo and compared it to the inactive ingredient list from Purdue and he believes that it is the use of huge amounts of cheap filler in the Endo tablet that is causing many of the differences, as well as the fact that the FDA allowes a large margin for the actual amount of medication per tablet, and endo is probably at the lowest end of the allowable amount. He also said differences in the chemical synthesis of the oxycodone between manufacturing plants can cause differences as well, and perhaps Endo's quality control was not perfected for the generic Oxycontin in their rush to bring a competing product to market against Purdue. Nevertheless, he told me that in the future he would sign all my scripts for oxycontin as "Do not Substitute" and "Oxycontin brand only" so I fortunatly won't have to go thru that experience again. It was really disappointing, especially considering that the price difference in Purdue's and Endo's Oxycontin is negligeable.
Sponsor
feelbad
08-19-2005, 11:12 AM
Thanks for the info as i am one the patients who suffered from this particular form of OC.i did stumble across some good info on a new form of generic OC.It is a generic from a co called Ivax?This is actually still made by perdue but it is 'their' generic form of their own brand name med.have not heard anything bad about this one yet.i would assume that it uses all the same things as the brand including the same delivery system and fillers.Is there anyone here who has tried this yet??i really am curious as to it's overall effectiveness.Marcia
Amsterdam
09-27-2005, 11:33 PM
I knew I was going to be in trouble when the pharmacist handed me the generic Endo today. I told them I've had issues with other generics in the past and if I had a problem, could I bring it back. The answer was no, that since it was a CII that it couldn't be taken back.
I take 20mg TID, and this is my first day on this Endo crap. Is there ANYTHING I can do to give this garbage back to them for the real OC? I have been suffering at the 20mg TID dose for months , being undermedicated and now this. Someone should make an announcement to stay away from the endo generic, this is horrible to do to chronic pain patients.
I am actually experiencing some withdrawl symptoms today, this is going to be a rough month. I mentioned an interest in the Meditronic pump today with my doc and he said we could do a trial, but I'm young and should try everything else first. I agree, but after being on OC for almost 2 years, I'm tired of being on the same dose and since my tolerance has risen, I'm in terrible pain. My docs answer today was to take an Aleve with the OC. :rolleyes:
I take 20mg TID, and this is my first day on this Endo crap. Is there ANYTHING I can do to give this garbage back to them for the real OC? I have been suffering at the 20mg TID dose for months , being undermedicated and now this. Someone should make an announcement to stay away from the endo generic, this is horrible to do to chronic pain patients.
I am actually experiencing some withdrawl symptoms today, this is going to be a rough month. I mentioned an interest in the Meditronic pump today with my doc and he said we could do a trial, but I'm young and should try everything else first. I agree, but after being on OC for almost 2 years, I'm tired of being on the same dose and since my tolerance has risen, I'm in terrible pain. My docs answer today was to take an Aleve with the OC. :rolleyes:
Shoreline
09-28-2005, 04:27 PM
Sorry Guys, Ivax is owned by Teva, not Purdue, so your basically getting the TEVA product made in an IVAX plant. IF you need Purdue, ask for Purdue.
Press Release
Teva to Acquire Ivax for $ 7.4 Billion
Combination Will Strengthen Global Leadership in Generics, Add New Product Lines and Growth Markets
Jerusalem, Israel and Miami, Florida, July 25, 2005 - TEVA Pharmaceutical Industries Ltd. (Nasdaq: TEVA) and IVAX Corporation (AMEX: IVX) jointly announced today that they have signed a definitive agreement providing for the acquisition of IVAX by TEVA. Under the terms of the agreement, shares of IVAX common stock will, at the election of the shareholder, be converted into either $26 in cash or 0.8471 TEVA ADRs, subject to proration such that no more than one-half of such elections are for cash and no more than half are for TEVA ADRs.
Press Release
Teva to Acquire Ivax for $ 7.4 Billion
Combination Will Strengthen Global Leadership in Generics, Add New Product Lines and Growth Markets
Jerusalem, Israel and Miami, Florida, July 25, 2005 - TEVA Pharmaceutical Industries Ltd. (Nasdaq: TEVA) and IVAX Corporation (AMEX: IVX) jointly announced today that they have signed a definitive agreement providing for the acquisition of IVAX by TEVA. Under the terms of the agreement, shares of IVAX common stock will, at the election of the shareholder, be converted into either $26 in cash or 0.8471 TEVA ADRs, subject to proration such that no more than one-half of such elections are for cash and no more than half are for TEVA ADRs.
mike j
09-29-2005, 02:51 AM
I wanted to share my experience with generic OxyContin.
Endo product has worked pretty good for me. I am taking 40 mg three times a day. I believe that they will do a pretty good job because they make Percocet. I have had pretty good results so far.
my breakthrough medicine was changed as well. Dilaudid for breakthrough pain.
I am using them together and having of very good result. when used with Oxy.
The only drawback is I do not have a breakthrough medication. Does anybody know why this combination works so well. I appreciate anybody's input. :)
Endo product has worked pretty good for me. I am taking 40 mg three times a day. I believe that they will do a pretty good job because they make Percocet. I have had pretty good results so far.
my breakthrough medicine was changed as well. Dilaudid for breakthrough pain.
I am using them together and having of very good result. when used with Oxy.
The only drawback is I do not have a breakthrough medication. Does anybody know why this combination works so well. I appreciate anybody's input. :)
feelbad
09-29-2005, 09:55 AM
Quick question for you mike.Were you already ON the purdue brand of OC and then switched to the endo or were you started right out on the endo version?Marcia
chriztene
09-29-2005, 12:19 PM
I am going through the same thing..Withdrawels, nausia, horrible pain. I just recently began taking the endo generic and it isnt even close to the name brand oxy. What are we to do? If there is a generic, my insurance requires I take the generic.
My dr. mentioned pallidone on my last visit, however, I have read it was recalled? I can not believe endo is actually getting away with this so called generic for oxy. This IS a very dangerous issue for pain patients. I went to endo's internet site and sent an email informing them the generic is pathetic aNd causing much suffering for many people.
Does anyone know of a comparible NEW med for pain? I will definately talk to my dr. and switch my meds asap. Again, the endo generic of oxy doesnt even resemble the name brand. Its as if it a totally different medication.
Does anyone have any recommendations on a newer med that is equalivant to oxy?
My dr. mentioned pallidone on my last visit, however, I have read it was recalled? I can not believe endo is actually getting away with this so called generic for oxy. This IS a very dangerous issue for pain patients. I went to endo's internet site and sent an email informing them the generic is pathetic aNd causing much suffering for many people.
Does anyone know of a comparible NEW med for pain? I will definately talk to my dr. and switch my meds asap. Again, the endo generic of oxy doesnt even resemble the name brand. Its as if it a totally different medication.
Does anyone have any recommendations on a newer med that is equalivant to oxy?
madhatter
09-29-2005, 01:14 PM
Hello group! I take o.c 60 mg tid. Last month i got my script,and i had the perdue 40's but they didn't have the 20s,so the pharmacist had to call my doc. and ok it to fill the 20s generic. I didn't really notice a difference until a few days ago when i got both,the 40s and 20s filled generic. There really is a noticable difference.It upsets my stomache a little,but in comparasin,it seems like i'm taking 40 mg of perdue.So when i see my doc. again,i'm going to ask to have her write d.a.w. in the box,or if she wants to keep me on the generic,can i go up to 80 mg. tid. Wich to me,would be equivilant to 40 mg of perdue.What do you's think?
chriztene
09-29-2005, 04:44 PM
What is DAW on the rx mean? Does this mean my insurance would have to cover the name brand? If the insurance will not cover the name brand with the DAW written on my rx, would the pharmacy let me pay the difference between the generic & purdue brand?
To the previous poster, I would tell your Dr. exactly what you are experiencing and ask him what you should do. I am sure we are not the only pm patients experiencing this issue with the generic endo.
Again, I am curious if there is a newer pain medicine which is as effective as oxy? Thanks in advance for any information.
C
To the previous poster, I would tell your Dr. exactly what you are experiencing and ask him what you should do. I am sure we are not the only pm patients experiencing this issue with the generic endo.
Again, I am curious if there is a newer pain medicine which is as effective as oxy? Thanks in advance for any information.
C
friendly_one
09-30-2005, 10:20 PM
Hi chriztene,
DAW means "Dispense As Written" and you may also see DNS "Do Not Substitue". If your doc writes DAW on your Rx, then some insurance companies will cover the cost and you just pay the higher co-pay. Some insurance companies, though, will not do this. Mine, for example. If I want brand name and a generic is available, then I would have to pay the higher co-pay PLUS the cost difference between the brand and generic drugs. This can be very expensive!! With my insurance company, from what I understand, it doesn't matter if DAW is written on the script. If there is a generic, I have to get it. If I want brand, and generic is available, I pay the difference.
Have you tried any other pain meds besides Oxy? I was taking Oxy, then switched to Duragesic. Fentanyl is the pain med in Duragesic and Actiq (that's my breakthrough med..it's a Fentanyl lollipop). As far as potency goes, Fentanyl is several times (I forgot how many exactly) stronger then Morphine. Shoreline can tell you more about pain meds and their potency. I believe there is a new pain med coming out in the next year or so. It's Oxymorphone. It's already available as an injection and I believe suppository, but it will be coming out in a Long Acting pill form for chronic pain. Again, Shoreline can tell you more. I hope this info has helped you.
Take care :angel:
DAW means "Dispense As Written" and you may also see DNS "Do Not Substitue". If your doc writes DAW on your Rx, then some insurance companies will cover the cost and you just pay the higher co-pay. Some insurance companies, though, will not do this. Mine, for example. If I want brand name and a generic is available, then I would have to pay the higher co-pay PLUS the cost difference between the brand and generic drugs. This can be very expensive!! With my insurance company, from what I understand, it doesn't matter if DAW is written on the script. If there is a generic, I have to get it. If I want brand, and generic is available, I pay the difference.
Have you tried any other pain meds besides Oxy? I was taking Oxy, then switched to Duragesic. Fentanyl is the pain med in Duragesic and Actiq (that's my breakthrough med..it's a Fentanyl lollipop). As far as potency goes, Fentanyl is several times (I forgot how many exactly) stronger then Morphine. Shoreline can tell you more about pain meds and their potency. I believe there is a new pain med coming out in the next year or so. It's Oxymorphone. It's already available as an injection and I believe suppository, but it will be coming out in a Long Acting pill form for chronic pain. Again, Shoreline can tell you more. I hope this info has helped you.
Take care :angel:
Amsterdam
09-30-2005, 11:13 PM
What is DAW on the rx mean? Does this mean my insurance would have to cover the name brand? If the insurance will not cover the name brand with the DAW written on my rx, would the pharmacy let me pay the difference between the generic & purdue brand?
To the previous poster, I would tell your Dr. exactly what you are experiencing and ask him what you should do. I am sure we are not the only pm patients experiencing this issue with the generic endo.
Again, I am curious if there is a newer pain medicine which is as effective as oxy? Thanks in advance for any information.
C
I've been on OxyContin® for almost 2yrs now. Since the generic came out I've been paying the difference which on 90ct 20mg's its about $20-30.
I just had to return the endo's for brand because they didn't work. I got zero relief and went into withdrawls within 1-2 days. I have been forgetting to ask for DAW, but never again. I also had Walgreens make a note in my acct to use brand name only.
I can't offer any input on another LA med, haven't tried any. If your going through w/d's I would take the meds back to your pharmacy or get in to your doc as I just went through this myself. The endo's are useless and I would be surprised to here of any OC patient that has switched over with success. I am anxious to hear what the full story is with the endo, it just makes no sense to be called identical.
To the previous poster, I would tell your Dr. exactly what you are experiencing and ask him what you should do. I am sure we are not the only pm patients experiencing this issue with the generic endo.
Again, I am curious if there is a newer pain medicine which is as effective as oxy? Thanks in advance for any information.
C
I've been on OxyContin® for almost 2yrs now. Since the generic came out I've been paying the difference which on 90ct 20mg's its about $20-30.
I just had to return the endo's for brand because they didn't work. I got zero relief and went into withdrawls within 1-2 days. I have been forgetting to ask for DAW, but never again. I also had Walgreens make a note in my acct to use brand name only.
I can't offer any input on another LA med, haven't tried any. If your going through w/d's I would take the meds back to your pharmacy or get in to your doc as I just went through this myself. The endo's are useless and I would be surprised to here of any OC patient that has switched over with success. I am anxious to hear what the full story is with the endo, it just makes no sense to be called identical.
Amsterdam
09-30-2005, 11:18 PM
*edit double post*
feelbad
10-02-2005, 09:39 AM
Hey amster,just wanted to mention that I had talked with the pharmacist at my walgreens to ask them about just making a notation or something on my acct regarding to ALWAYS give me the name brand vs the generic,but from what she told me,and this is a pharm who I have a really good relationship with as i am there like all the time,she told me that unfortunetly,even if they did place a notation to always use the name brand,it would not matter.i absolutely still had to have that DAW on every single individual script for my OC.no matter what.so just be careful and do not ever rely on the fact that just because this is noted,that you will automatically get it.not without the DAW.i just don't want to hear that you had to go through the Endo nightmare again because you thought you had it all covered.when dealing with something like this,please,just make sure to always have that DAW,just so you can be sure of getting the name brand only.Everytime i call in my Rx requests for my Rxs to be written and picked up at my PM,i keep a sheet of paper in front of me on the counter that says in big letters,dont forget DAW.if i didn't do this,quite honestly,i KNOW I would forget about half the time.this is such an important three little letters that now, i cover all my bases to make sure it is on every Rx.my husband usually picks up my Rxs when they need to be filled and I told him to always open the envelope and actually look at my OC Rx to make darn sure the DAW is on the Rx before he leaves that clinic.like you, I had such a horrible time with the endo crap that the thought of having to go through all that again really keeps me on top of at least THIS particular issue.don't assume anything,K?marcia
hangin
10-02-2005, 03:41 PM
Hi, :wave:
I posted on another thread regarding generic versus brand for OC. I figured this might be a better one.
I have been taken OC for a time and have always used brand. The manufacturer my pharmacy uses is TEVAU. Does anyone know anything about this manufacturer? Do they make a good generic?
If not I will check with my insurance and see if my policy if just a higher co-pay for brand. I would be curious if I get better relief from the brand. It is a shame that these companies can come out with a generic that people suffer with.
Thank you for any information. Take care.
Peace and love, Hangin
I posted on another thread regarding generic versus brand for OC. I figured this might be a better one.
I have been taken OC for a time and have always used brand. The manufacturer my pharmacy uses is TEVAU. Does anyone know anything about this manufacturer? Do they make a good generic?
If not I will check with my insurance and see if my policy if just a higher co-pay for brand. I would be curious if I get better relief from the brand. It is a shame that these companies can come out with a generic that people suffer with.
Thank you for any information. Take care.
Peace and love, Hangin
Amsterdam
10-02-2005, 04:13 PM
Hey amster,just wanted to mention that I had talked with the pharmacist at my walgreens to ask them about just making a notation or something on my acct regarding to ALWAYS give me the name brand vs the generic,but from what she told me,and this is a pharm who I have a really good relationship with as i am there like all the time,she told me that unfortunetly,even if they did place a notation to always use the name brand,it would not matter.i absolutely still had to have that DAW on every single individual script for my OC.no matter what.so just be careful and do not ever rely on the fact that just because this is noted,that you will automatically get it.not without the DAW.i just don't want to hear that you had to go through the Endo nightmare again because you thought you had it all covered.when dealing with something like this,please,just make sure to always have that DAW,just so you can be sure of getting the name brand only.Everytime i call in my Rx requests for my Rxs to be written and picked up at my PM,i keep a sheet of paper in front of me on the counter that says in big letters,dont forget DAW.if i didn't do this,quite honestly,i KNOW I would forget about half the time.this is such an important three little letters that now, i cover all my bases to make sure it is on every Rx.my husband usually picks up my Rxs when they need to be filled and I told him to always open the envelope and actually look at my OC Rx to make darn sure the DAW is on the Rx before he leaves that clinic.like you, I had such a horrible time with the endo crap that the thought of having to go through all that again really keeps me on top of at least THIS particular issue.don't assume anything,K?marcia
Thanks for bringing that up Marcia. Its something I need to make a note of or I'll forget, and it will save me from paying the difference. Its about a $20 difference on 90ct 20mg's. I will get the DAW from now on, because I can't afford to relive that experience.
I would like to know how the Endo version is so different from the Purdue brand. I found some info on a patent infringement against Endo that Purdue filed, and here is some the article:
OxyContin, a time-release painkiller generally prescribed to cancer patients and chronic-pain sufferers, had about $2 billion in sales last year. The drug is considered a controlled substance because its potential for abuse is similar to morphine's.
This was a patent infringement case in which the patents were held unenforceable by the trial court due to inequitable conduct during prosecution before the USPTO. Purdue Pharma filed an infringement suit against Endo alleging that Endo’s proposed generic versions of OxyContin®, would infringe three Purdue patents. The district court found that Endo would infringe Purdue’s patents, but determined the patents were unenforceable due to the inequitable conduct that occurred during prosecution. Purdue appealed the inequitable conduct judgment.
The three patents asserted by Purdue against Endo are directed to controlled release oxycodone medications for the treatment of moderate to severe pain. The patents are related: U.S. Patents No. 5,656,295 (the “’295 patent”) and No. 5,508,042 (the “’042 patent”) are, respectively, a continuation-in-part and a divisional of U.S. Patent No. 5,549,912 (the “’912 patent”). The ’912 patent itself is a continuation-in-part of U.S. Patent No. 5,266,331 (the “’331 patent”), which Purdue has not asserted against Endo.
The “Detailed Description” section of the written description in each asserted patent opens with the following statement, which played a prominent role in the trial court’s inequitable conduct determination:
It has now been surprisingly discovered that the presently claimed controlled release oxycodone formulations acceptably control pain over a substantially narrower, approximately four-fold [range] (10 to 40 mg every 12 hours—around-the-clock dosing) in approximately 90% of patients. This is in sharp contrast to the approximately eight-fold range required for approximately 90% of patients for opioid analgesics in general.
The thrust of this language is that the invented oxycodone formulation using a four-fold range of dosages (e.g., between 10 mg and 40 mg) achieves the same clinical results as the prior art opioid formulations using an eight-fold range of dosages (e.g., between 10 mg and 80 mg). The written description later explains that the “clinical significance” of the four-fold dosage range of the oxycodone formulations of the present invention, as compared to other opioid analgesics, such as morphine, requiring twice the dosage range, is a more efficient titration process, which is the process of adjusting a patient’s dosage to provide acceptable pain relief without unacceptable side effects.
This was taken from : http://www.patentbaristas.com/archives/000200.php
I'm not quite sure what the 4 fold and 8 fold arguement is about. Is it saying that the same results are found from dosage ranging from 10mg to 40mg , as from 10mg to 80mg? Does that mean that Purdue mislead the courts stating that a range from 10mg - 40mg would be a sufficient range in titration to an adequate dose? , and now instead its actually a 10mg - 80mg range that is required in titration to appropriate dose. Is that resulting in increased sales for Purdue?
I could be entirely off , but I would like to know how Endo has been able to prove that it has an equivalent product to Purdue. I would also like to know exactly how the time release works as in what can interfere with the release. I am having trouble getting my doses to a particular set time of day , because with my nerve pain it fluctuates SO MUCH and is different every day.
I know my base dose is too low, and I am not given BT meds so understanding the time release function is very important so that I can keep a steady level in my system to avoid the flair ups as much as possible.
I usually only get about 1-2 hours of actual 50% relief after taking a dose and then my pain is out of control again. Its unfortunate , but I am having trouble convincing my doc to approve an increase. Also, an increase would only be beneficial if I can make the appropriate dose last the desired 8 hrs. Thats why I want to know about the time release and specifically what happens and how I can manage it from day to day. I've read that patients taking the 160mg doses should refrain from eating any foods high in fat, so those are the types of things I'd like to know so I can get the maximum benefit from the lowest possible dose. Is it best to take with minimal food a certain amount of time before and after the dose? What can be done to get maximum results from the meds so I don't have to continuously increase the dose if it can be avoided with some nutritional or other practice. I don't like the clouded head feeling, so I want to try and keep the oral meds to the very minimum needed to be effective.
Thanks for bringing that up Marcia. Its something I need to make a note of or I'll forget, and it will save me from paying the difference. Its about a $20 difference on 90ct 20mg's. I will get the DAW from now on, because I can't afford to relive that experience.
I would like to know how the Endo version is so different from the Purdue brand. I found some info on a patent infringement against Endo that Purdue filed, and here is some the article:
OxyContin, a time-release painkiller generally prescribed to cancer patients and chronic-pain sufferers, had about $2 billion in sales last year. The drug is considered a controlled substance because its potential for abuse is similar to morphine's.
This was a patent infringement case in which the patents were held unenforceable by the trial court due to inequitable conduct during prosecution before the USPTO. Purdue Pharma filed an infringement suit against Endo alleging that Endo’s proposed generic versions of OxyContin®, would infringe three Purdue patents. The district court found that Endo would infringe Purdue’s patents, but determined the patents were unenforceable due to the inequitable conduct that occurred during prosecution. Purdue appealed the inequitable conduct judgment.
The three patents asserted by Purdue against Endo are directed to controlled release oxycodone medications for the treatment of moderate to severe pain. The patents are related: U.S. Patents No. 5,656,295 (the “’295 patent”) and No. 5,508,042 (the “’042 patent”) are, respectively, a continuation-in-part and a divisional of U.S. Patent No. 5,549,912 (the “’912 patent”). The ’912 patent itself is a continuation-in-part of U.S. Patent No. 5,266,331 (the “’331 patent”), which Purdue has not asserted against Endo.
The “Detailed Description” section of the written description in each asserted patent opens with the following statement, which played a prominent role in the trial court’s inequitable conduct determination:
It has now been surprisingly discovered that the presently claimed controlled release oxycodone formulations acceptably control pain over a substantially narrower, approximately four-fold [range] (10 to 40 mg every 12 hours—around-the-clock dosing) in approximately 90% of patients. This is in sharp contrast to the approximately eight-fold range required for approximately 90% of patients for opioid analgesics in general.
The thrust of this language is that the invented oxycodone formulation using a four-fold range of dosages (e.g., between 10 mg and 40 mg) achieves the same clinical results as the prior art opioid formulations using an eight-fold range of dosages (e.g., between 10 mg and 80 mg). The written description later explains that the “clinical significance” of the four-fold dosage range of the oxycodone formulations of the present invention, as compared to other opioid analgesics, such as morphine, requiring twice the dosage range, is a more efficient titration process, which is the process of adjusting a patient’s dosage to provide acceptable pain relief without unacceptable side effects.
This was taken from : http://www.patentbaristas.com/archives/000200.php
I'm not quite sure what the 4 fold and 8 fold arguement is about. Is it saying that the same results are found from dosage ranging from 10mg to 40mg , as from 10mg to 80mg? Does that mean that Purdue mislead the courts stating that a range from 10mg - 40mg would be a sufficient range in titration to an adequate dose? , and now instead its actually a 10mg - 80mg range that is required in titration to appropriate dose. Is that resulting in increased sales for Purdue?
I could be entirely off , but I would like to know how Endo has been able to prove that it has an equivalent product to Purdue. I would also like to know exactly how the time release works as in what can interfere with the release. I am having trouble getting my doses to a particular set time of day , because with my nerve pain it fluctuates SO MUCH and is different every day.
I know my base dose is too low, and I am not given BT meds so understanding the time release function is very important so that I can keep a steady level in my system to avoid the flair ups as much as possible.
I usually only get about 1-2 hours of actual 50% relief after taking a dose and then my pain is out of control again. Its unfortunate , but I am having trouble convincing my doc to approve an increase. Also, an increase would only be beneficial if I can make the appropriate dose last the desired 8 hrs. Thats why I want to know about the time release and specifically what happens and how I can manage it from day to day. I've read that patients taking the 160mg doses should refrain from eating any foods high in fat, so those are the types of things I'd like to know so I can get the maximum benefit from the lowest possible dose. Is it best to take with minimal food a certain amount of time before and after the dose? What can be done to get maximum results from the meds so I don't have to continuously increase the dose if it can be avoided with some nutritional or other practice. I don't like the clouded head feeling, so I want to try and keep the oral meds to the very minimum needed to be effective.
Shoreline
10-02-2005, 05:56 PM
Hi Amsterdam, The way you describe your pain as varying so dramatically from one day to the next, I honestly think you will have the same problem with any med. The only way to combat a higher level of pain is with a higher dose. Docs tend to dose meds at your base level of pain rather than your highest level of pain., So if you pain jumps from a 3 one day to 8 the next day taking the same dose, I don't see where one brand of product is going to make a significant difference. It would make more sense to have an appropriate amount of BT meds available to manage the days where your pain is twice as bad.
Docs must use some control over your daily dose and how long it lasts. Otherwise it appears the patient is in complete control of the dose. IE if the doc says just take what you need for that day and I'll refill the script early if you have lots of bad days, He won’t be in practice long. First your insurance won't pay for it unless a change in dosing is made and secondly it gives the appearance of self-medication. The only self-medicating that is expectable is PRN use of BT meds.
Days where the base is managing your pain, don't take the BT meds, days where your Base dose isn't touching your level of pain you need something additional, The only appropriate way would be to give you the means to manage it yourself safely or leave any increase to the mercy of the mercy of the ER docs who treat chronic illness or pain very different from an acute illness.
For example if you had no history of chronic pain and woke up and your leg was numb and went to the ER, They would treat it as acute and likely do significant diagnostics right then, MRI, CT etc. However if a chronic patient goes to the doc and says my meds just aren't working today, your not going to get an MRI or likely even an Xray. Perhaps a shot to relive the pain enough to discharge you with instructions to follow up with your PM doc.
Acute problems are treated very differently than chronic, although there is the possibility that you have re injured or further injured a problem area, but ER's are not designed to find the source of a chronic illness, they are for the care of acute illness or injury. It's just the way it is.
IF you know you need an increase keep a log and show them that more often than not your pain is out of control. But simply going to the PM doc because you are having a flair doesn’t really justify increasing your base dose until the flair has ended. But if you can document the effectiveness, when it wears off, the level of pain before and after taking the meds, it gives your PM doc more info to work with than you hurt more today than the last time he saw you.
As far as Purdue keeping other products off the market, they really wanted it both ways. First they claim other products are not close enough to be called a generic so shouldn't be granted generic status. The second complaint is that these generics are too close to their product and infringe on their patent rights, So which is, too close, not close enough or whatever works to keep a competitor off the market.
I haven't taken the generic version of OC. I would bet if you stuck with Purdues’ claim that their med lasted 12 hours you would be just as unhappy without BT meds as you would with a lesser quality generic dosed 3 times a day.
Purdues' stand was so strong on the 12 hour life of OxyC, they contacted thousands of pharmacies and PM docs and told them do not right OxyC for anything other than twice a day. They still wont except a script for their patient assistance program for anything other than 12 hour dosing.
This place all liability on the prescriber and the pharmacist that fills a script in any other way than the manufacturers insisted dosing directions. Should something happen that brought about litigation. The doc didn't follow Purdues guidelines and the pharmacist had been told not to fill any script written for more than twice a day dosing. So that's where the negligence falls.. So be careful what you ask for, If you insist on name band OxyC you may have to except their other claims as well, not just the part you want to adhere too or believe. You may be trading 3 times a day dosing of a weaker med for 12 hour dosing of a med that doesn't last 12 hours.
Law suites were also brought against Purdue for what was called a false claim of 12 hours of relief to boost sales of their short acting line. Their prescribing info recommends using their SA line, OxyIR and OxyFast to fill in the gaps in coverage and relief that OxyC can't cover for 12 hours.
The insistence on 12 hours of relief passes any liability for prescribing OxyC any other way than twice a day onto the prescribing doc. The suite claimed they knew it didn't last 12 hours and recommending their specific SA brand name products to increase sales of Oxyfast and OxyIR. Neither of which have high tech or unique delivery systems. How does making liquid versions of a med make it so unique it deserves a patent , or putting their product in a fast dissolving gel cap instead of a compacted pill a unique characteristic that deserves a patent. But they both had patents for several years and that's what Purdue recommended you use if you had BT pain. They raked in billions keeping other manufacturers off the market.
Trust me, Purdue is no saint and can't have it both ways. Their product may be more effective for 8 hours, but that's not how they insist it should be prescribed and made life miserable for 10's of thousands of patients taking it when they went on their twice a day marketing campaign 4 years ago.
That claim also brought more scrutiny on docs that were prescribing it more than twice a day, gave patients a right to claim negligence on a docs part that prescribed it any other way. Any of the patients that abused it , injected, snorted and drank on top still had a claim against the doc that prescribed it differently from the way Purdue recommended.
Aside from these things, they absolutely price gouge, Oxycodone has been around for 40+ ears and the Contin delivery system was invented in 1972. Are the recouping R& D expenses on development of OxyC or simply gouging patients that can afford it the least. Be careful what you ask for and what you put on that pedestal without knowing all the facts.
IF you simply gave up and committed suicide your family would likely be quick to sue the doc for misprescribing OxyC due to Purdues' claim of 12 hour relief. They could argue you were over medicated and this was the cause of your suicide. So a doc willing to prescribe it 3 times a day is going out on a limb in a patient population 600 times more likely to commit suicide than the general population.
Was the suicide really from over medication, or from lack of relief, ability to cope and sheer exhaustion of dealing with chronic pain and the treatment we receive. Should docs base their prescribing on patient reporting or the handouts that Purdues’ vast marketing and sales team has passed out to most every PM doc and most every pharmacy they could reach to support their two fold claim of patent infringement. One Their product is the only 12 hour one so the others aren't close enough to be called a generics and 2, The other product is so close to their product it infringes on their patent rights. Which is it, not close enough , or too close?
It's human nature to want to blame somebody regardless of the stats on suicide in the CP community, especially when an attorney is telling your surviving family members the doc was grossly negligent for listening to you when you said it doesn't last 12 hours and prescribed it every 8. Is you doc negligent because he listened to you instead of Purdue?
Good luck, Dave
Docs must use some control over your daily dose and how long it lasts. Otherwise it appears the patient is in complete control of the dose. IE if the doc says just take what you need for that day and I'll refill the script early if you have lots of bad days, He won’t be in practice long. First your insurance won't pay for it unless a change in dosing is made and secondly it gives the appearance of self-medication. The only self-medicating that is expectable is PRN use of BT meds.
Days where the base is managing your pain, don't take the BT meds, days where your Base dose isn't touching your level of pain you need something additional, The only appropriate way would be to give you the means to manage it yourself safely or leave any increase to the mercy of the mercy of the ER docs who treat chronic illness or pain very different from an acute illness.
For example if you had no history of chronic pain and woke up and your leg was numb and went to the ER, They would treat it as acute and likely do significant diagnostics right then, MRI, CT etc. However if a chronic patient goes to the doc and says my meds just aren't working today, your not going to get an MRI or likely even an Xray. Perhaps a shot to relive the pain enough to discharge you with instructions to follow up with your PM doc.
Acute problems are treated very differently than chronic, although there is the possibility that you have re injured or further injured a problem area, but ER's are not designed to find the source of a chronic illness, they are for the care of acute illness or injury. It's just the way it is.
IF you know you need an increase keep a log and show them that more often than not your pain is out of control. But simply going to the PM doc because you are having a flair doesn’t really justify increasing your base dose until the flair has ended. But if you can document the effectiveness, when it wears off, the level of pain before and after taking the meds, it gives your PM doc more info to work with than you hurt more today than the last time he saw you.
As far as Purdue keeping other products off the market, they really wanted it both ways. First they claim other products are not close enough to be called a generic so shouldn't be granted generic status. The second complaint is that these generics are too close to their product and infringe on their patent rights, So which is, too close, not close enough or whatever works to keep a competitor off the market.
I haven't taken the generic version of OC. I would bet if you stuck with Purdues’ claim that their med lasted 12 hours you would be just as unhappy without BT meds as you would with a lesser quality generic dosed 3 times a day.
Purdues' stand was so strong on the 12 hour life of OxyC, they contacted thousands of pharmacies and PM docs and told them do not right OxyC for anything other than twice a day. They still wont except a script for their patient assistance program for anything other than 12 hour dosing.
This place all liability on the prescriber and the pharmacist that fills a script in any other way than the manufacturers insisted dosing directions. Should something happen that brought about litigation. The doc didn't follow Purdues guidelines and the pharmacist had been told not to fill any script written for more than twice a day dosing. So that's where the negligence falls.. So be careful what you ask for, If you insist on name band OxyC you may have to except their other claims as well, not just the part you want to adhere too or believe. You may be trading 3 times a day dosing of a weaker med for 12 hour dosing of a med that doesn't last 12 hours.
Law suites were also brought against Purdue for what was called a false claim of 12 hours of relief to boost sales of their short acting line. Their prescribing info recommends using their SA line, OxyIR and OxyFast to fill in the gaps in coverage and relief that OxyC can't cover for 12 hours.
The insistence on 12 hours of relief passes any liability for prescribing OxyC any other way than twice a day onto the prescribing doc. The suite claimed they knew it didn't last 12 hours and recommending their specific SA brand name products to increase sales of Oxyfast and OxyIR. Neither of which have high tech or unique delivery systems. How does making liquid versions of a med make it so unique it deserves a patent , or putting their product in a fast dissolving gel cap instead of a compacted pill a unique characteristic that deserves a patent. But they both had patents for several years and that's what Purdue recommended you use if you had BT pain. They raked in billions keeping other manufacturers off the market.
Trust me, Purdue is no saint and can't have it both ways. Their product may be more effective for 8 hours, but that's not how they insist it should be prescribed and made life miserable for 10's of thousands of patients taking it when they went on their twice a day marketing campaign 4 years ago.
That claim also brought more scrutiny on docs that were prescribing it more than twice a day, gave patients a right to claim negligence on a docs part that prescribed it any other way. Any of the patients that abused it , injected, snorted and drank on top still had a claim against the doc that prescribed it differently from the way Purdue recommended.
Aside from these things, they absolutely price gouge, Oxycodone has been around for 40+ ears and the Contin delivery system was invented in 1972. Are the recouping R& D expenses on development of OxyC or simply gouging patients that can afford it the least. Be careful what you ask for and what you put on that pedestal without knowing all the facts.
IF you simply gave up and committed suicide your family would likely be quick to sue the doc for misprescribing OxyC due to Purdues' claim of 12 hour relief. They could argue you were over medicated and this was the cause of your suicide. So a doc willing to prescribe it 3 times a day is going out on a limb in a patient population 600 times more likely to commit suicide than the general population.
Was the suicide really from over medication, or from lack of relief, ability to cope and sheer exhaustion of dealing with chronic pain and the treatment we receive. Should docs base their prescribing on patient reporting or the handouts that Purdues’ vast marketing and sales team has passed out to most every PM doc and most every pharmacy they could reach to support their two fold claim of patent infringement. One Their product is the only 12 hour one so the others aren't close enough to be called a generics and 2, The other product is so close to their product it infringes on their patent rights. Which is it, not close enough , or too close?
It's human nature to want to blame somebody regardless of the stats on suicide in the CP community, especially when an attorney is telling your surviving family members the doc was grossly negligent for listening to you when you said it doesn't last 12 hours and prescribed it every 8. Is you doc negligent because he listened to you instead of Purdue?
Good luck, Dave
wirry1422
10-02-2005, 06:07 PM
No, the warning for eating high fat foods with the 160 mg dose is actually because high fat meals increase the efficacy of the dose measurably, but not hugely. So with such a high doseage, Purdue was just concerned about someone having possible od symptoms due to eating the high fat meal. Personally, they were probably just trying to cover there legal bases by inserting that warning. But, yes, if you want to increase the absorbtion and efficacy of your oc dose, probably the number one thing you can do is to always take your dose about 30 minutes after eating a high fat meal. Even though it kinda seems counterintuitive, taking the oc on an empty stomach will not allow for as much of the med to be readily absorbed as taking it on a high fat meal does. Otherwise there isn't too much else you can do to change the duration and efficacy of your doses. Just keep in mind that a majority of patients on oc (brand included) take a dose every 8 hours, not every 12, and most doctors recognize from experience that the oc really doesn't last a full 12 hours in most patients. If you are on the 12 hour schedule, and your doc is determined not to prescribe the oc more frequently, you should seriously consider talking to your doc about bt meds, which are especially important for those on the 12 hour dosing schedule. As for Teva, I don't know how their products are, particularly ?I have never had the Teva oxycontin. But just based on the Endo experience, I would be extremely concerned about taking any brand of OC other then Purdue. I know we all complain that Purdue is overpriced and horribly expensive, but I must admit now, that compared to other companies, they certainly do make a quality product. And the fact that a 90 ct. of Endo 20 mg OC is ONLY $20 cheaper then the Purdue OC is absolutely insane, especially considering the terrible quality generic OC product they are making. Good Luck.
Amsterdam
10-02-2005, 07:09 PM
Thanks Shoreline for the insightful explanation on something that is difficult to get a grasp on. I completely understand what your saying as far as self medication goes, because I am forced with that almost everyday. I am struggling and keeping a pain journal is something I need to do because staying at this dose is literally risking too much. I would much rather be given a sufficient dose to bring the pain within tolerance than to be miserable all day long except for the hour or two following my TID dose of 20mg OxyC. The doc said that I should take Aleve in between doses of OC to help with keeping the pain in check. I get a little irritated with that because I've been at a struggling dose of opiates for so long.
In the beginning of taking OC, I would get relief and found myself with motivation to actually accomplish things on my "to do" list, and now I am so unmotivated its creating a serious problem. I need to clarify that my pain fluctuates throughout the day , some days will be worse than others but right now I don't have good days. I never have a day thats a 3 and another thats an 8. I know its subjective, but my pain is more like a 3 when I wake up and around the late morning as I start to walk more it starts to quickly rise as the first dose is starting to wear off. Lets say I take my first dose at 8:30am, at the 5 or 6 hour mark my pain is up around the 7 range and I'll take the second dose but its not enough to bring the pain back down to the initial 3 or so. So then I'm in a situation of the majority of my day that I'm active being at my highest pain level.
My doc doesn't believe in BT meds, he is a neurologist. I should probably be seeing a PM doc because my doc is not very willing to increase my meds according to my tolerance. I not expecting to get total relief, but since I have to deal with all the side effects of being on opiates for pain, the dependance and everything else, I should at least be getting some relief from it. I have been asking for increases ever since I started seeing this doc, but he seems to have an idea of what is "too much" pain meds and doesn't look at it in the tolerance point of view. I never received a proper titration , rather was given what he thinks is a sufficient amount of meds. Thats another reason I should be seeking a PM doc. My excuse is basically all the other docs that I've been seeing trying to figure out what the root cause of all this pain is. I personally think its nerve damage that happened at the very second of the accident, and has continually got worse because. I don't know what can be done to thoroughly
test nerves besides an EEG, but I will do anything to find the problem in hope of a cure. I've had an MRI, but from what I gather those don't always show everything.
I have also not tried everything in terms of treating the pain. I haven't tried accupunture, or scar treatment, massage, etc. I have just been trying to get the problem DX'd so we can focus on a plan of treatment for the pain. I would literally give anything to be off pain meds for good, as I hate where I am at right now. This is not a fun way of life, and I guess I just need to sit down and write out my options as no doctor has taken the time to give me any. They basically say we don't know what the problem is, but lets try this or that and for the 3 years since the accident I've been in severe pain everyday without end. I can't compare my pain to anyone elses, but I can say that my quality of life due to inadequate care and treatment has left me to be somewhat desperate to make it through the day.
I hope this doesn't come across as a bunch of whining, but I wanted to be clear why it is I am so determined to find out as much information about medication and/or modalities that may help me have a better life. I suppose the bottom line is I need to get into a pain clinic and stop trying to self - medicate and tell my doc what I think I need. I guess I just expected them to take the control and tell me what I need to do, but since they don't know whats wrong, its usually them asking me what I think should be done. Maybe its the way I come across to them, but I have tried to learn as much as I can to help figure out the DX.
I appreciate all the help here, and you guys/gals are so helpful to us that are in a struggle. I have many more things I am doing in my life, and pain is right there as the first thing I deal with every morning. I am sorry for the rambling I've done here, but I just try to get as much help as I can because I just can't stand dealing with this pain all day long. The help I've got on here has been extremely inspiring and maybe I'll start to make more progress on getting my pain condition DX'd and start working on some invasive techniques that can do more than what the meds are capable of. I can tell that no matter what stregnth of meds I am prescribed, its never going to relieve my pain, but if I am given enough to help stabilize my situation in order to help motivate me to get other treatment.
Sorry for rambling, I feel a little better now. :) The side effect that has really bothered me with the meds is my anger, it has become very hard to control due to frustration. I should probably see a psychologist to help talk out my problems, because some of the pain could be from a mental image imprinted in my head from the injury/trauma.
I was looking on the Meditronic website, and will be making some calls to get in to see a PM doc that has some better knowledge about managing pain and titration. I have been stuggling at too low of a dose for too long, and I can't really blame anyone but myself. I have been finding more and more information about what the cause of my pain could be. I found that the majority of my pain follows the same path as the Saphenous nerve. I don't think that the nerve has been severed, but I can tell that somewhere along that nerve there is some damage that causes severe pain/sensitivity from my foot all the way up to my back. I am not crazy about getting a sympathetic nerve block but that may be the only way to go. They did a nerve block post-op due to the intense pain after the hardware removal. I was given IV Dilaudid in after the surgery and it wasn't touching the pain. I've also been on such high levels of Morphine in the hospital that doctors have completely freaked out when they looked at the machine and saw what level it was set to. I have a high tolerance to opiates.
Wirry, thanks for clarification.. As far as Purdue, I'm sure they aren't totally concerned with patient satisfaction as compared to the bottom line. I do think they make a good product, but it doesn't last 12hrs. Its just like the Fentanyl patch not lasting 72hrs. I have never experienced a pain med that gives the amount of relief it claims, and I'm sure theres a reason for that. Everyone has a different metabolism, and some peoples body will probably clear out a medication faster than another(my case) and some will take longer. They are going to err on the side of safety though so somewhere in the middle is probably how they determine the amount of time a med should last.
In the beginning of taking OC, I would get relief and found myself with motivation to actually accomplish things on my "to do" list, and now I am so unmotivated its creating a serious problem. I need to clarify that my pain fluctuates throughout the day , some days will be worse than others but right now I don't have good days. I never have a day thats a 3 and another thats an 8. I know its subjective, but my pain is more like a 3 when I wake up and around the late morning as I start to walk more it starts to quickly rise as the first dose is starting to wear off. Lets say I take my first dose at 8:30am, at the 5 or 6 hour mark my pain is up around the 7 range and I'll take the second dose but its not enough to bring the pain back down to the initial 3 or so. So then I'm in a situation of the majority of my day that I'm active being at my highest pain level.
My doc doesn't believe in BT meds, he is a neurologist. I should probably be seeing a PM doc because my doc is not very willing to increase my meds according to my tolerance. I not expecting to get total relief, but since I have to deal with all the side effects of being on opiates for pain, the dependance and everything else, I should at least be getting some relief from it. I have been asking for increases ever since I started seeing this doc, but he seems to have an idea of what is "too much" pain meds and doesn't look at it in the tolerance point of view. I never received a proper titration , rather was given what he thinks is a sufficient amount of meds. Thats another reason I should be seeking a PM doc. My excuse is basically all the other docs that I've been seeing trying to figure out what the root cause of all this pain is. I personally think its nerve damage that happened at the very second of the accident, and has continually got worse because. I don't know what can be done to thoroughly
test nerves besides an EEG, but I will do anything to find the problem in hope of a cure. I've had an MRI, but from what I gather those don't always show everything.
I have also not tried everything in terms of treating the pain. I haven't tried accupunture, or scar treatment, massage, etc. I have just been trying to get the problem DX'd so we can focus on a plan of treatment for the pain. I would literally give anything to be off pain meds for good, as I hate where I am at right now. This is not a fun way of life, and I guess I just need to sit down and write out my options as no doctor has taken the time to give me any. They basically say we don't know what the problem is, but lets try this or that and for the 3 years since the accident I've been in severe pain everyday without end. I can't compare my pain to anyone elses, but I can say that my quality of life due to inadequate care and treatment has left me to be somewhat desperate to make it through the day.
I hope this doesn't come across as a bunch of whining, but I wanted to be clear why it is I am so determined to find out as much information about medication and/or modalities that may help me have a better life. I suppose the bottom line is I need to get into a pain clinic and stop trying to self - medicate and tell my doc what I think I need. I guess I just expected them to take the control and tell me what I need to do, but since they don't know whats wrong, its usually them asking me what I think should be done. Maybe its the way I come across to them, but I have tried to learn as much as I can to help figure out the DX.
I appreciate all the help here, and you guys/gals are so helpful to us that are in a struggle. I have many more things I am doing in my life, and pain is right there as the first thing I deal with every morning. I am sorry for the rambling I've done here, but I just try to get as much help as I can because I just can't stand dealing with this pain all day long. The help I've got on here has been extremely inspiring and maybe I'll start to make more progress on getting my pain condition DX'd and start working on some invasive techniques that can do more than what the meds are capable of. I can tell that no matter what stregnth of meds I am prescribed, its never going to relieve my pain, but if I am given enough to help stabilize my situation in order to help motivate me to get other treatment.
Sorry for rambling, I feel a little better now. :) The side effect that has really bothered me with the meds is my anger, it has become very hard to control due to frustration. I should probably see a psychologist to help talk out my problems, because some of the pain could be from a mental image imprinted in my head from the injury/trauma.
I was looking on the Meditronic website, and will be making some calls to get in to see a PM doc that has some better knowledge about managing pain and titration. I have been stuggling at too low of a dose for too long, and I can't really blame anyone but myself. I have been finding more and more information about what the cause of my pain could be. I found that the majority of my pain follows the same path as the Saphenous nerve. I don't think that the nerve has been severed, but I can tell that somewhere along that nerve there is some damage that causes severe pain/sensitivity from my foot all the way up to my back. I am not crazy about getting a sympathetic nerve block but that may be the only way to go. They did a nerve block post-op due to the intense pain after the hardware removal. I was given IV Dilaudid in after the surgery and it wasn't touching the pain. I've also been on such high levels of Morphine in the hospital that doctors have completely freaked out when they looked at the machine and saw what level it was set to. I have a high tolerance to opiates.
Wirry, thanks for clarification.. As far as Purdue, I'm sure they aren't totally concerned with patient satisfaction as compared to the bottom line. I do think they make a good product, but it doesn't last 12hrs. Its just like the Fentanyl patch not lasting 72hrs. I have never experienced a pain med that gives the amount of relief it claims, and I'm sure theres a reason for that. Everyone has a different metabolism, and some peoples body will probably clear out a medication faster than another(my case) and some will take longer. They are going to err on the side of safety though so somewhere in the middle is probably how they determine the amount of time a med should last.
Shoreline
10-03-2005, 04:49 AM
Hey Amsterdam, Thanks for clarifying your pain pattern, I think your right that a PM doc would be a little more understanding about tolerance , after 3 years and only reaching a minumim dose, no titration or paient imput, makes it tough to stick to a schedule. I've had docs with all different views on opiates from no opiates at all to LA but no BT and like yourslef was struggling to find what worked.
It was actually an insurance change that forced me to change docs or continue to pay out of pocket for apts and 60 dollar a pop TP injections. Changing docs was the greatest thing I did to help my level of pain and increase function. My new group of docs also had much more to offer than the physiatrist I was seing. Procedure wise, experience with patients that had higher dose needs and tolerance issues and availabilty of advanced pain management systems, like the pump or scs. Doc #1 couldn't offer a pump or scs trial because she didn't do implants or management.
My first PM doc that that used LA meds preferred the shutgun aporach where she had me on so many different meds rather than actually increase the opiate or use BT meds that when I switchd docs, the first thing he did was increase opiates 50% and add BT meds. On my own I discontinued 5 other meds in the first month doc #1 had me on that I was willing to try just hoping for some added bit of relief. More like alot of side effects and sedation but no added relief. I discontinued one afte the other and noticed no increase in pain which sure made me feel like I had been taking a boat load of useless drugs.
An agressive PM doc can also dose your meds acording to your pain pattern, IF that's a consistant pattern why not dose that way. Something like 20-40-40 or 4o-60-60. If they were never truly titrated your really starting from scratch. The longer it goes on the less likely that a small increase is even going to make a signicant difference.
IF you change docs, point out that you were never really titrated exactly as you explained it me. No doc can guess what amount of medication you need. There is no chart that say whiplash should respond to this, low back pain post op should respond to that or X amount will deal with any other problem. No titration leaves you behind the 8 ball struggling to manage with a dose some doc picked from the sky.
You may end up on 3 times the dose of opiates you are on now, but taking half the number of different meds as I did. Personally I think if they can manage the pain with the right dose of 3-4 meds it's much healthier and keeps your head clearer than trying to manage the pain with low doses of 8 or 9 different meds, plus whatever OTC meds you may happen to add. "the shot gun aproach".
It's getting late here so I'll check in tomorrow. You might want to check out the GFJDI website "GrapeFruit juice drug Interaction" and see what effect grapefruit has on the meds you take.
Take care, Dave
It was actually an insurance change that forced me to change docs or continue to pay out of pocket for apts and 60 dollar a pop TP injections. Changing docs was the greatest thing I did to help my level of pain and increase function. My new group of docs also had much more to offer than the physiatrist I was seing. Procedure wise, experience with patients that had higher dose needs and tolerance issues and availabilty of advanced pain management systems, like the pump or scs. Doc #1 couldn't offer a pump or scs trial because she didn't do implants or management.
My first PM doc that that used LA meds preferred the shutgun aporach where she had me on so many different meds rather than actually increase the opiate or use BT meds that when I switchd docs, the first thing he did was increase opiates 50% and add BT meds. On my own I discontinued 5 other meds in the first month doc #1 had me on that I was willing to try just hoping for some added bit of relief. More like alot of side effects and sedation but no added relief. I discontinued one afte the other and noticed no increase in pain which sure made me feel like I had been taking a boat load of useless drugs.
An agressive PM doc can also dose your meds acording to your pain pattern, IF that's a consistant pattern why not dose that way. Something like 20-40-40 or 4o-60-60. If they were never truly titrated your really starting from scratch. The longer it goes on the less likely that a small increase is even going to make a signicant difference.
IF you change docs, point out that you were never really titrated exactly as you explained it me. No doc can guess what amount of medication you need. There is no chart that say whiplash should respond to this, low back pain post op should respond to that or X amount will deal with any other problem. No titration leaves you behind the 8 ball struggling to manage with a dose some doc picked from the sky.
You may end up on 3 times the dose of opiates you are on now, but taking half the number of different meds as I did. Personally I think if they can manage the pain with the right dose of 3-4 meds it's much healthier and keeps your head clearer than trying to manage the pain with low doses of 8 or 9 different meds, plus whatever OTC meds you may happen to add. "the shot gun aproach".
It's getting late here so I'll check in tomorrow. You might want to check out the GFJDI website "GrapeFruit juice drug Interaction" and see what effect grapefruit has on the meds you take.
Take care, Dave
feelbad
10-03-2005, 08:53 AM
Hey amster,i just had a suggestion for you as your pain pattern really seems to be alot like mine and from the same type of pain generators.I actually have five seperate areas of some very severe pain all caused from seperate reasons and specific to certain tracts and nerves being damaged.but i just wanted to ask you if you have ever tried a TENs unit to try and control pain flares?This really really has helped me ALOT.and the thing i lke the most is that when my flares are bad and i absolutely have to get a certain thing done or accomplished,i can pop those patches on set my control and still get up and do things.i think this may work well for you too.Just a thought.I do also agree totally that you would get much better treatment seeing an actual PM vs any neurologist or neurosurgeon.They just have soo many different modalities availiable to try.When I first started there,i had an in depth chat with the doc and we discussed the OC dosing at the recommended 12 hours which my PM said,after I told him that I really only get 8-10 hours of relief from the OC.I knew I was in the right place when he totally agreed with me that 8 hours is probably the best that any patient with severe chronic pain could realistically expect from the OC and all of my dosing has always been the every 8 hours and never the standard 12.that really IS quite a joke.i cannot believe that with all of the PMs out there actually rxing the stuff at 8 hour intervals that purdue still stands by that 12 hour claim.they HAVE to know what is actually going on you know?
Anyway,if possible, please try and get your hands on a TENS,really,nothing seemed to really help with any of my horrid flares until I started using the TENS a few months ago.i wouldn't part with it for anything now.i am also only allowed two oxy IRs per day for BT pain which really IS quite a joke in itself,and i really really had to prove my need for those too.The standard policy at my PM is to not to use BT meds so as you can imagine,i had to fight for the right for just the two.but now having the TENS availiable, I am better able to utilize those two precious IRs for when I am having to actually leave my house for some reason and cannot use my TENS for whatever reason.but i just thought that since your pain appears to be so similar to mine that the TENS would really be helpful to some extent anyway.good luck,Marcia
Anyway,if possible, please try and get your hands on a TENS,really,nothing seemed to really help with any of my horrid flares until I started using the TENS a few months ago.i wouldn't part with it for anything now.i am also only allowed two oxy IRs per day for BT pain which really IS quite a joke in itself,and i really really had to prove my need for those too.The standard policy at my PM is to not to use BT meds so as you can imagine,i had to fight for the right for just the two.but now having the TENS availiable, I am better able to utilize those two precious IRs for when I am having to actually leave my house for some reason and cannot use my TENS for whatever reason.but i just thought that since your pain appears to be so similar to mine that the TENS would really be helpful to some extent anyway.good luck,Marcia
Shoreline
10-03-2005, 12:38 PM
Hey Amsterdam, Marcia is dealing with nerve pain where I was fortunate enough that surgery relieved the pain I had in some areas of my legs and damaged other nerves to the point of numbness in the other areas, specifically from the hips to my knees.
I remember waiting for surgery and being in the same position asking the docs just to severe the sensory and peripheral nerves to my legs,. It was something they actually did back in the 70's but found regrowth usually created more problems than the initial severing relieved.
Some of the things they can do if tens is no longer effective is nerve blocks to isolate which nerves are effected and then do ablation procedures of those specific nerves either with Radio frequency nerve ablation or chemical. RF seems to be the more popular now and can offer months or years of relief, If that doesn’t work you still know what nerves are damaged and can look into doing a trial of the SCS. The newer models have greater capability than just a few years go. Some have up to 16 leads to cover every lumbar nerve root where older models just had a couple leads.
There is also a procedure call TINS, where they place acupuncture needle into the affected area and run current directly through the area., It's basically deep muscle stim versus topical like Tens . However it's not something you can do from home, It's a procedure you need to have done frequently if it does provide relief.
Nerve pain is definitely harder to manage with opiates, I remember waiting for surgery and the pain meds would relieve back pain and not touch the leg and foot pain caused by nerve impingement’s. When things get as bad as you describe you just have to be open to whatever may help. I guess it was the other thread where you asked about nerve testing. EMG's and nerve conductive studies haven't changed in the last few decades and are still the only real test they can do to find or isolate specific nerve problems but that's just a pre test to determine where to do diagnostic blocks, nerve blocks, RFA or SCS placement.
You might find you do beter at a PM clinic that has multiple doctors with different specialties. Anesthesiologists that have specialized in PM are better trained to do blocks although there are some Physiatrist and other PM docs doing them. Anesthesiology is really the specialty that's best suited to use needles near or around your spine and do interventional procedures. Some neuro surgeons will do them too but not many surgeons specialize in PM and that may be all they can or are willing to do. Where a PM clinic that has a number of docs from different fields of specialty like Neurology, Anesthesiology, Osteopathic medicine, Physiatry and Psychiatry can handle all aspects of your care.
I'm pretty much describing the clinic I go to but they really have positioned themselves with the right docs, the right technology and facility to handle everything from Basic PM with antidepressants to the most advanced nerve blocks done on site and management of implantable devices. If you can't find a local clinic you might want to check the nearest major Med school. More med schools have pain management depts to offer Board certification in PM for anesthesiologist, physical medicine or any specialty that wants to do a fellowship in Pain management.
When you are seeing a single doc in practice there is just no way that one doc can offer every modality there is. So I hopped frm one doc after another that all believed they had the answer to pain whether it was antidepressants, acupuncture and hypnosis or antiseizure meds and bio feedback or chiropractic manipulations and trigger point injections. Each one was convinced they had the answer to treating pain and used the same methods on every patient which isn't what you need. A multi faceted approach to managing your pan will likely offer more relief than any one doc alone can.
I would look for a group that can offer everything from meds, to interventional procedures like blocks and implants, different modalities like acupuncture and TINS and counseling. Counseling isn't likely going to relieve a lot of pain but many PM psychologist can teach some of the techniques that may help get through BT periods when other methods just aren't cutting it. It's not that Biofeedback, self hypnosis and guided imagery can't help, but you can't live in the real world in a trance. I've learned to relax using several different methods where I can lay down with severe pain, relax to the point of falling asleep and waking up an hour later feeling a little better. However, once you start moving around again and have all the external stimuli going on you can't stay in that state of relaxation. It's also good to have someone to tell things that would probably scare your family and loved ones if they really knew how severe the pain is and how desperate you feel.
Yo do have alot of options you haven't tried so there is no reason to give up. You just have to keep trying new methods untill you find what works or that you can use when things get bad.
Take care, Dave
I remember waiting for surgery and being in the same position asking the docs just to severe the sensory and peripheral nerves to my legs,. It was something they actually did back in the 70's but found regrowth usually created more problems than the initial severing relieved.
Some of the things they can do if tens is no longer effective is nerve blocks to isolate which nerves are effected and then do ablation procedures of those specific nerves either with Radio frequency nerve ablation or chemical. RF seems to be the more popular now and can offer months or years of relief, If that doesn’t work you still know what nerves are damaged and can look into doing a trial of the SCS. The newer models have greater capability than just a few years go. Some have up to 16 leads to cover every lumbar nerve root where older models just had a couple leads.
There is also a procedure call TINS, where they place acupuncture needle into the affected area and run current directly through the area., It's basically deep muscle stim versus topical like Tens . However it's not something you can do from home, It's a procedure you need to have done frequently if it does provide relief.
Nerve pain is definitely harder to manage with opiates, I remember waiting for surgery and the pain meds would relieve back pain and not touch the leg and foot pain caused by nerve impingement’s. When things get as bad as you describe you just have to be open to whatever may help. I guess it was the other thread where you asked about nerve testing. EMG's and nerve conductive studies haven't changed in the last few decades and are still the only real test they can do to find or isolate specific nerve problems but that's just a pre test to determine where to do diagnostic blocks, nerve blocks, RFA or SCS placement.
You might find you do beter at a PM clinic that has multiple doctors with different specialties. Anesthesiologists that have specialized in PM are better trained to do blocks although there are some Physiatrist and other PM docs doing them. Anesthesiology is really the specialty that's best suited to use needles near or around your spine and do interventional procedures. Some neuro surgeons will do them too but not many surgeons specialize in PM and that may be all they can or are willing to do. Where a PM clinic that has a number of docs from different fields of specialty like Neurology, Anesthesiology, Osteopathic medicine, Physiatry and Psychiatry can handle all aspects of your care.
I'm pretty much describing the clinic I go to but they really have positioned themselves with the right docs, the right technology and facility to handle everything from Basic PM with antidepressants to the most advanced nerve blocks done on site and management of implantable devices. If you can't find a local clinic you might want to check the nearest major Med school. More med schools have pain management depts to offer Board certification in PM for anesthesiologist, physical medicine or any specialty that wants to do a fellowship in Pain management.
When you are seeing a single doc in practice there is just no way that one doc can offer every modality there is. So I hopped frm one doc after another that all believed they had the answer to pain whether it was antidepressants, acupuncture and hypnosis or antiseizure meds and bio feedback or chiropractic manipulations and trigger point injections. Each one was convinced they had the answer to treating pain and used the same methods on every patient which isn't what you need. A multi faceted approach to managing your pan will likely offer more relief than any one doc alone can.
I would look for a group that can offer everything from meds, to interventional procedures like blocks and implants, different modalities like acupuncture and TINS and counseling. Counseling isn't likely going to relieve a lot of pain but many PM psychologist can teach some of the techniques that may help get through BT periods when other methods just aren't cutting it. It's not that Biofeedback, self hypnosis and guided imagery can't help, but you can't live in the real world in a trance. I've learned to relax using several different methods where I can lay down with severe pain, relax to the point of falling asleep and waking up an hour later feeling a little better. However, once you start moving around again and have all the external stimuli going on you can't stay in that state of relaxation. It's also good to have someone to tell things that would probably scare your family and loved ones if they really knew how severe the pain is and how desperate you feel.
Yo do have alot of options you haven't tried so there is no reason to give up. You just have to keep trying new methods untill you find what works or that you can use when things get bad.
Take care, Dave
Amsterdam
10-03-2005, 01:25 PM
Hey Shoreline, That is really helpful information. You have a great talent for communicating your experience and advice for others. I am glad you are able to offer so much knowledge, because that is what is so important in finding what works. The leg pain is what causes me the most pain, and I hope that a new PM doc could help me deal with it. I will look into TINS also, thats very interesting.
Marcia, its funny you posted that about having similar pain because I posted almost the same thing in the other "generic OxyC" topic. I have been treated with TENS , but only in physical therapy and didn't really notice much improvement. But, I also never got to use the TENS when I had a flair up so I think its worth trying. I was actually looking at buying one about a week ago, so I may just go ahead and get one. I do remember being in PT and one of the therapists hooking up the TENS would be able to just crank it up as far as it would go and it wouldn't bother me. It seemed like for most people they hooked it up to, they couldn't handle it being turned up. Maybe the one they had didn't work too well. Thanks again for all the help.
I really just want a doc that can tell me what it is I have. I know its a nerve problem, but I would like to know which one specifically and how to treat it. I thought I read somewhere on here that someone was given a nerve block and had a very painful reaction. The last time I had surgery, to remove hardware in my leg, the pain was unbearable and the anesthesiologist gave me a nerve block around the groin area. The weird thing is that it took them a few tries to get it, and coming from them that wasn't normal. I don't know if that is what is causing my problem, but I wouldn't be surprised if they could have damaged a nerve while doing the injection or the injection somehow caused another condition.
Marcia, its funny you posted that about having similar pain because I posted almost the same thing in the other "generic OxyC" topic. I have been treated with TENS , but only in physical therapy and didn't really notice much improvement. But, I also never got to use the TENS when I had a flair up so I think its worth trying. I was actually looking at buying one about a week ago, so I may just go ahead and get one. I do remember being in PT and one of the therapists hooking up the TENS would be able to just crank it up as far as it would go and it wouldn't bother me. It seemed like for most people they hooked it up to, they couldn't handle it being turned up. Maybe the one they had didn't work too well. Thanks again for all the help.
I really just want a doc that can tell me what it is I have. I know its a nerve problem, but I would like to know which one specifically and how to treat it. I thought I read somewhere on here that someone was given a nerve block and had a very painful reaction. The last time I had surgery, to remove hardware in my leg, the pain was unbearable and the anesthesiologist gave me a nerve block around the groin area. The weird thing is that it took them a few tries to get it, and coming from them that wasn't normal. I don't know if that is what is causing my problem, but I wouldn't be surprised if they could have damaged a nerve while doing the injection or the injection somehow caused another condition.
feelbad
10-04-2005, 09:58 AM
i think i was the one with the very painful reaction to the blocks,but it is not uncommon.when i had my first ESI way back before when all i was dealing with was the herniated disc(ah,those were the days)as soon as the doc injected the actual needle into the C spine area i got this horrid jolt of extreme pain that just shot from the neck down through my arm.luckily it didn't last long,But i had a huge increase in my normal pain for about four days and then actually got some real relief but only about a weeks worth then everything came back.unfortunetly the other two inj really did not do much at all so I stopped them all together.
from the symptoms you described it really does appear that you have definite nerve damage andnot something can easily be "repaired' i am unfortunetly in the same boat and it alljust really sucks.i do think that you should definitely give the TENS another try.you can actually ramp that sucker up to like over fifty if you need to.Right now i usually go about 9 for my legs.The thing about the TENS and how well it actually works is finding the 'right' spots for the patches.If you have the unit you can try different settings in different places.there are luckily many possible ways to try this depending on which area you are trying to get a handle on.I did not actually have to buy my unit(although just because of the good relief i get,i may just buy one)i am currently renting it from the vendor co that my PM uses.so far, i have not actually recieved a real bill so i am assuming that my ins co is possibly picking up the full tab?But renting it first might be the way to go for you before forkin out like the 100.00 it costs.i think it would really help you with at the very least,knocking down the flares.mine are actually almost intolerable sometimes,just horrible.the TENS really is the first and only thing that gives me any sort of relief at all when this happens.it just does not respond to narcotics at all when this happens.as long as you have the ability to ramp the signals up,you can actually kind of override the pain signals,which I guess is the way this is supposed to work.i just think that you do owe it to yourself to at least give it another go under your own ability for placement and settings.unfortunetly the type of nerve pain that we both seem to have, using things like the TENS is really what works the best.I have actually tried it in my other areas of pain too but it seems to do the best job on my RSD pain.it does not however do anything much for my central pain syndrome.This particular pain is spread through my L arm and up over my shoulder blades and feels exactly like a bad second degree burn(or raw exposed nerve endings?)multiplied times ten.it is just 'there' with these really nasty stingingburning type jolts flares that are just beyond description.but since they just come and go at will, there isn't anyway to really control them when they happen.even a light breeze over the skin surface shoots the pain level up,just like with a severe burn?strange.but the RSD flares,when they happen are constant and screaming and last quite a while so it is a bit easier to hit them and then keep them better knocked down with something like the TENS.i hope things get better foryou.Marcia
from the symptoms you described it really does appear that you have definite nerve damage andnot something can easily be "repaired' i am unfortunetly in the same boat and it alljust really sucks.i do think that you should definitely give the TENS another try.you can actually ramp that sucker up to like over fifty if you need to.Right now i usually go about 9 for my legs.The thing about the TENS and how well it actually works is finding the 'right' spots for the patches.If you have the unit you can try different settings in different places.there are luckily many possible ways to try this depending on which area you are trying to get a handle on.I did not actually have to buy my unit(although just because of the good relief i get,i may just buy one)i am currently renting it from the vendor co that my PM uses.so far, i have not actually recieved a real bill so i am assuming that my ins co is possibly picking up the full tab?But renting it first might be the way to go for you before forkin out like the 100.00 it costs.i think it would really help you with at the very least,knocking down the flares.mine are actually almost intolerable sometimes,just horrible.the TENS really is the first and only thing that gives me any sort of relief at all when this happens.it just does not respond to narcotics at all when this happens.as long as you have the ability to ramp the signals up,you can actually kind of override the pain signals,which I guess is the way this is supposed to work.i just think that you do owe it to yourself to at least give it another go under your own ability for placement and settings.unfortunetly the type of nerve pain that we both seem to have, using things like the TENS is really what works the best.I have actually tried it in my other areas of pain too but it seems to do the best job on my RSD pain.it does not however do anything much for my central pain syndrome.This particular pain is spread through my L arm and up over my shoulder blades and feels exactly like a bad second degree burn(or raw exposed nerve endings?)multiplied times ten.it is just 'there' with these really nasty stingingburning type jolts flares that are just beyond description.but since they just come and go at will, there isn't anyway to really control them when they happen.even a light breeze over the skin surface shoots the pain level up,just like with a severe burn?strange.but the RSD flares,when they happen are constant and screaming and last quite a while so it is a bit easier to hit them and then keep them better knocked down with something like the TENS.i hope things get better foryou.Marcia
Amsterdam
10-05-2005, 01:39 AM
Hi Marcia, I don't know if you can relate to this, but in my area of the most pain(foot and ankle), I have constant throbbing / twitching of the muscle? or tendon or nerve. Its almost just like having another pulse, I was checking my heartbeat and the twitching was happening out of sync with the heartbeat. Its crazy that I have that twitching that is constantly happening, and never stops. I know that has to be a cause or a good indication of what is going on here...now if I can figure out how to get it to stop.
I used a "rescue" med today that I keep around for emergencies, and that gave me a good reduction of pain, and it was because of that relief I was able to notice that throbbing happening. Most of the time my foot is in such pain, I can't even notice that its throbbing , all I can feel is it in constant pain. So since this twitching is happening all the time, if something can be done to stop it from doing that I might be able to stop or reduce some of the pain. Would this be a nerve , muscle or tendon that would be constantly twitching? What can be done to stop it from doing that?
Its crazy that my pain is so badly managed, lack of meds , that this problem was only noticed because I had extra relief today.
thanks in advance for any help.
I used a "rescue" med today that I keep around for emergencies, and that gave me a good reduction of pain, and it was because of that relief I was able to notice that throbbing happening. Most of the time my foot is in such pain, I can't even notice that its throbbing , all I can feel is it in constant pain. So since this twitching is happening all the time, if something can be done to stop it from doing that I might be able to stop or reduce some of the pain. Would this be a nerve , muscle or tendon that would be constantly twitching? What can be done to stop it from doing that?
Its crazy that my pain is so badly managed, lack of meds , that this problem was only noticed because I had extra relief today.
thanks in advance for any help.
feelbad
10-05-2005, 09:45 AM
I too have experienced new and interesting pain when other pain has been taken away.Its funny how something like that goes really unnoticed until one other sensation or pain has been removed from the equasion.
what you are describing really sounds like a nerve that has run amuck.it appears from what you have stated that a nerve(somewhere?) is being constantly stimulated from 'something"?and is affecting the muscle with constant signals.From what i really can't say,but a nerve IS being overstimulated from something somewhere,but as far as actually pinning the nerve down would have to be done by something like an EMG perhaps.There are just sooo many different nerves that actually run thorugh some very small areas.God, some days it feels like i can actually 'feel" every single one screaming at me for attention,lol.is this twitching actually painful in nature or just totally annoying? just so i know, what exactly IS your pain problems stemming from?trauma? a specific condition?something in your lower back?I don't think I have seen 'your whole story" actually posted anywhere.If you could actually tell me what started your pain process going it would help me alot to try and help you,you know?a TENS could possibly help counteract that nerve stimulation at least to some degree.Maybe it could kind of "redirect" it?
If you could provide me with the whole picture of your reasons for your pain starting, it would really help alot.thanks,Marcia
what you are describing really sounds like a nerve that has run amuck.it appears from what you have stated that a nerve(somewhere?) is being constantly stimulated from 'something"?and is affecting the muscle with constant signals.From what i really can't say,but a nerve IS being overstimulated from something somewhere,but as far as actually pinning the nerve down would have to be done by something like an EMG perhaps.There are just sooo many different nerves that actually run thorugh some very small areas.God, some days it feels like i can actually 'feel" every single one screaming at me for attention,lol.is this twitching actually painful in nature or just totally annoying? just so i know, what exactly IS your pain problems stemming from?trauma? a specific condition?something in your lower back?I don't think I have seen 'your whole story" actually posted anywhere.If you could actually tell me what started your pain process going it would help me alot to try and help you,you know?a TENS could possibly help counteract that nerve stimulation at least to some degree.Maybe it could kind of "redirect" it?
If you could provide me with the whole picture of your reasons for your pain starting, it would really help alot.thanks,Marcia
Amsterdam
10-05-2005, 01:27 PM
I too have experienced new and interesting pain when other pain has been taken away.Its funny how something like that goes really unnoticed until one other sensation or pain has been removed from the equasion.
what you are describing really sounds like a nerve that has run amuck.it appears from what you have stated that a nerve(somewhere?) is being constantly stimulated from 'something"?and is affecting the muscle with constant signals.From what i really can't say,but a nerve IS being overstimulated from something somewhere,but as far as actually pinning the nerve down would have to be done by something like an EMG perhaps.There are just sooo many different nerves that actually run thorugh some very small areas.God, some days it feels like i can actually 'feel" every single one screaming at me for attention,lol.is this twitching actually painful in nature or just totally annoying? just so i know, what exactly IS your pain problems stemming from?trauma? a specific condition?something in your lower back?I don't think I have seen 'your whole story" actually posted anywhere.If you could actually tell me what started your pain process going it would help me alot to try and help you,you know?a TENS could possibly help counteract that nerve stimulation at least to some degree.Maybe it could kind of "redirect" it?
If you could provide me with the whole picture of your reasons for your pain starting, it would really help alot.thanks,Marcia
Hi Marcia, Thanks for helping, I'll explain my situation. About 3 years ago I was at work and a 6,000lb machine fell on top of me. I was pinned underneath when other workers rushed over and about 10-15 people lifted up on it and I actually had to drag myself out from under it. I had to use my righ t arm to pull my entire body away from under the machine because my leg and clavicle(collar bone) were broken. It was a surreal experience and the most traumatic thing I'd ever been in. Once I was a few feet from the machine, I was sitting with both legs extended out, the right one was crushed, and was just all smashed up and the right ankle was also smashed.
My clavicle was broken and I held it with my right arm so it wouldn't hang. I had to try and hold completely still because the slightest movement , I would feel the bones crunching around. I just wanted to pass out, the pain was more than I could bear. I remember feeling like I was in a war and I would have to hold myself together until help arrived. The ambulance took about 10-15 min to arrive , it was horrible. That was the longest 15 min of my life.
When I was put into the ambulance I was in terrible pain. They gave me Morphine, but it didn't even touch the pain. I can't remember the dose, but for some reason I thought I remember hearing 2mg. I was screaming for more, and one of the medics wanted to give it and the other said he has already been given the max.
I felt every bump, the ride was torture. At the hospital, they did emergency surgery and put in a rod and screws into my leg. After I went home, the agony continued and pain was through the roof. I was only given the standard dose of painkillers 10/325 hydros. I would be up for 48 to 72 hrs straight until I would finally pass out from exhaustion. I could not get enough comfort to sleep.
That went on for awhile, few months. Then started PT. I was on crutches for an unbelievable amount of time. I don't remember how long, but it was MUCH longer than the PT people had ever seen. I simply couldn't walk without them. Then I was on one crutch for a long time long after the xrays showed that the bone had healed and the doc gave me 100% weight bearing.
So, PT went on forever. Never actually made much improvement. I got the range of motion, but the pain never left. I went through rigorous PT all combined probably a year. No luck, so the option of removing the hardware to see if that was the issue causing pain. That got removed and didn't reduce the pain. That removal was probably almost 2 years ago and here I am.
So thats the background and sorry if it was too descriptive, but I thought it'd help if I described what I went through in some way could have affected my brains process of pain. I know the brain is what processes all the pain we feel, so in some way being in the intense pain I was in, maybe my brain has been affected in that area.
So with that said. I have constant "twitching" going on in my leg, ankle. Its numb and for the most part usually ranges from a 3 to 8 on the scale everyday. Mornings are ok, then late morning the pain start to rise into the 4-5 range with little to no activity. I could wake up and sit on the couch for 3 hrs and it will increase on the scale. By afternoon its around a 5-6 and thats when I go into work. At work its almost immediately a 7-8 and out of control. I have a great deal of walking at my job(maintenance) and it really makes the pain bad. I don't do alot of crouching, kneeling or bending down. My leg just won't let me do that, way to painful. So I do alot of walking, then I'll rest for about 10-15 min. I work four , ten hr days and by the end of the night I'm limping quite bad.
thanks for taking the time to help, I really appreciate everything that gets suggested here. I will be buying a TENS unit within the next day or so.
what you are describing really sounds like a nerve that has run amuck.it appears from what you have stated that a nerve(somewhere?) is being constantly stimulated from 'something"?and is affecting the muscle with constant signals.From what i really can't say,but a nerve IS being overstimulated from something somewhere,but as far as actually pinning the nerve down would have to be done by something like an EMG perhaps.There are just sooo many different nerves that actually run thorugh some very small areas.God, some days it feels like i can actually 'feel" every single one screaming at me for attention,lol.is this twitching actually painful in nature or just totally annoying? just so i know, what exactly IS your pain problems stemming from?trauma? a specific condition?something in your lower back?I don't think I have seen 'your whole story" actually posted anywhere.If you could actually tell me what started your pain process going it would help me alot to try and help you,you know?a TENS could possibly help counteract that nerve stimulation at least to some degree.Maybe it could kind of "redirect" it?
If you could provide me with the whole picture of your reasons for your pain starting, it would really help alot.thanks,Marcia
Hi Marcia, Thanks for helping, I'll explain my situation. About 3 years ago I was at work and a 6,000lb machine fell on top of me. I was pinned underneath when other workers rushed over and about 10-15 people lifted up on it and I actually had to drag myself out from under it. I had to use my righ t arm to pull my entire body away from under the machine because my leg and clavicle(collar bone) were broken. It was a surreal experience and the most traumatic thing I'd ever been in. Once I was a few feet from the machine, I was sitting with both legs extended out, the right one was crushed, and was just all smashed up and the right ankle was also smashed.
My clavicle was broken and I held it with my right arm so it wouldn't hang. I had to try and hold completely still because the slightest movement , I would feel the bones crunching around. I just wanted to pass out, the pain was more than I could bear. I remember feeling like I was in a war and I would have to hold myself together until help arrived. The ambulance took about 10-15 min to arrive , it was horrible. That was the longest 15 min of my life.
When I was put into the ambulance I was in terrible pain. They gave me Morphine, but it didn't even touch the pain. I can't remember the dose, but for some reason I thought I remember hearing 2mg. I was screaming for more, and one of the medics wanted to give it and the other said he has already been given the max.
I felt every bump, the ride was torture. At the hospital, they did emergency surgery and put in a rod and screws into my leg. After I went home, the agony continued and pain was through the roof. I was only given the standard dose of painkillers 10/325 hydros. I would be up for 48 to 72 hrs straight until I would finally pass out from exhaustion. I could not get enough comfort to sleep.
That went on for awhile, few months. Then started PT. I was on crutches for an unbelievable amount of time. I don't remember how long, but it was MUCH longer than the PT people had ever seen. I simply couldn't walk without them. Then I was on one crutch for a long time long after the xrays showed that the bone had healed and the doc gave me 100% weight bearing.
So, PT went on forever. Never actually made much improvement. I got the range of motion, but the pain never left. I went through rigorous PT all combined probably a year. No luck, so the option of removing the hardware to see if that was the issue causing pain. That got removed and didn't reduce the pain. That removal was probably almost 2 years ago and here I am.
So thats the background and sorry if it was too descriptive, but I thought it'd help if I described what I went through in some way could have affected my brains process of pain. I know the brain is what processes all the pain we feel, so in some way being in the intense pain I was in, maybe my brain has been affected in that area.
So with that said. I have constant "twitching" going on in my leg, ankle. Its numb and for the most part usually ranges from a 3 to 8 on the scale everyday. Mornings are ok, then late morning the pain start to rise into the 4-5 range with little to no activity. I could wake up and sit on the couch for 3 hrs and it will increase on the scale. By afternoon its around a 5-6 and thats when I go into work. At work its almost immediately a 7-8 and out of control. I have a great deal of walking at my job(maintenance) and it really makes the pain bad. I don't do alot of crouching, kneeling or bending down. My leg just won't let me do that, way to painful. So I do alot of walking, then I'll rest for about 10-15 min. I work four , ten hr days and by the end of the night I'm limping quite bad.
thanks for taking the time to help, I really appreciate everything that gets suggested here. I will be buying a TENS unit within the next day or so.
feelbad
10-06-2005, 09:25 AM
Don't worry about being too descriptive,back when i actually had a life i worked as an FF medic for fifteen years up til my last surgery stopped everything,including anything and everything that used to give me any joy or made me happy.the one thing that has caused me the most emotinal pain was having to give up a job that I truely loved,and i have to say,i was rather good at.just so you know, the medics most likely DID give you the max MS dose they were allowed.every ambulance service has their own set of protocols regarding giving any meds in the field,and unfortunetly, while they can give 'some' it is not always enough.I am certain they probably wanted to give you as much as you needed,as I have been in that position myself.Have seen some rather amazing trauma over the years.Have also seen the human body in some of the bizarre contorted positions that I never imagined it could go.That always bothered me much more than seeing the blood and gore.there are just certain postitions that the body should not be in.Rather freaky though.
you were very lucky that they removed that piece of machinery off you as soon as they did as the longer a part of the body is actually crushed and the blood supply is actually cut off,will bring on another set of major complications just due to the crush injury itself.as soon as that blood flow stops nourishing the healthey tissue,it actually starts the dying process which creates all kinds of nasty chemicals to build up into the affected part.along with the blood pressure issues that happen as soon as the blood suddenly starts to flow back into the affected part and possibly 'out" of the body.If things are not done correctly during the removal of the offending piece of machinery(two large bore IVs just for starters)you actually could die within minutes of the removal just from shock.It does appear you were in some great hands,just incase you have ever wondered about that.
all i can say about your actual injuries is wow.you really did have quite the major traumatic experience.I can totally see now why you are having the problems you are having.unfortunetly,i am sure you have some major nerve injury and all of the unfortunate 'fun" that comes along for the ride.have you ever been given an actual "rundown' on the extent of your actual injuries like in relation to just what nerves are actully injured or even dead?have you ever had an EMG done to try and determine that alone?Have you ever totally researched just "crush injuries" or 'crush injury syndrome"?i do believe that there are specific types of actual crush syndromes that are unique to the type of injury that was suffered.it might give you a bit better insight on just what you may be dealing with here,you know what I mean?injuries that are caused by trauma are way different in nature than say someone like me who suffered alot of nerve damage due to actual surgical intervention.The violent nature and the kinetics involved make it a much more unique situation,really.You usually have tearing and crushing of nerves instead of just a cut.This kind of 'freaks' out the nerves in a differnt way.you know what I mean?i do think that any sort of relief that you may be able to get is going to have to come from something that is a little more "out of the box" from most people.I am kinda in the same boat too and it really does suck.I do think though that trying that tENS really may help you as it has me,at least to some degree.It is by no means even close to being a cureall,but it does help me when those flares hit full force to knock them back down at least to some degree.So just for that reason alone,i will keep using it.You take what you can get when you are dealing with hidious levels of pain.gosh, I am really sorry for all you have had to go through,really. i know what it like to be in a rehab hospital just trying to get "something" back.You work your butt off for days just for very little reward at times.but that little bit really does give you hope and keeps you motivated.I do hope you can find something soon that will give you some good relief.marcia
you were very lucky that they removed that piece of machinery off you as soon as they did as the longer a part of the body is actually crushed and the blood supply is actually cut off,will bring on another set of major complications just due to the crush injury itself.as soon as that blood flow stops nourishing the healthey tissue,it actually starts the dying process which creates all kinds of nasty chemicals to build up into the affected part.along with the blood pressure issues that happen as soon as the blood suddenly starts to flow back into the affected part and possibly 'out" of the body.If things are not done correctly during the removal of the offending piece of machinery(two large bore IVs just for starters)you actually could die within minutes of the removal just from shock.It does appear you were in some great hands,just incase you have ever wondered about that.
all i can say about your actual injuries is wow.you really did have quite the major traumatic experience.I can totally see now why you are having the problems you are having.unfortunetly,i am sure you have some major nerve injury and all of the unfortunate 'fun" that comes along for the ride.have you ever been given an actual "rundown' on the extent of your actual injuries like in relation to just what nerves are actully injured or even dead?have you ever had an EMG done to try and determine that alone?Have you ever totally researched just "crush injuries" or 'crush injury syndrome"?i do believe that there are specific types of actual crush syndromes that are unique to the type of injury that was suffered.it might give you a bit better insight on just what you may be dealing with here,you know what I mean?injuries that are caused by trauma are way different in nature than say someone like me who suffered alot of nerve damage due to actual surgical intervention.The violent nature and the kinetics involved make it a much more unique situation,really.You usually have tearing and crushing of nerves instead of just a cut.This kind of 'freaks' out the nerves in a differnt way.you know what I mean?i do think that any sort of relief that you may be able to get is going to have to come from something that is a little more "out of the box" from most people.I am kinda in the same boat too and it really does suck.I do think though that trying that tENS really may help you as it has me,at least to some degree.It is by no means even close to being a cureall,but it does help me when those flares hit full force to knock them back down at least to some degree.So just for that reason alone,i will keep using it.You take what you can get when you are dealing with hidious levels of pain.gosh, I am really sorry for all you have had to go through,really. i know what it like to be in a rehab hospital just trying to get "something" back.You work your butt off for days just for very little reward at times.but that little bit really does give you hope and keeps you motivated.I do hope you can find something soon that will give you some good relief.marcia
Amsterdam
10-06-2005, 07:26 PM
Thanks for being so helpful Marcia, I feel that I have someone that can relate to what I'm going through. I found a TENS unit online that I'm gonna purchase tonight.
Your theory seems right on as far as the pain, I'm am going to research the crushing injuries. I have had one EMG, but it was almost like the doc was flying through it too fast. I am having another one done in a couple weeks because I've noticed a large increase in pain, tingling and numbness from my back, down through my rear, down the leg and into the foot.
Now, is there anything that can be done to fix nerve damage or is it a matter of coping with it thru meds, TENS, PT, etc. I just want to have it improve as much as possible.
I called a pain clinic today, they were closed but I will call again tomorrow. I am anxious to go and see what they can do for me.
On a different note, today was not so good at work. The boss wanted to make me go work with the same type of machine that crushed me. I told him no, and he basically said that it was part of my job and that I should think about it. Again, I said no thanks I'll pass. Mind you, this place is not run by the brightest people, but I thought them just asking that was way out of line. They will probably try and fire me for it. I don't get along with most people that I work with and its mostly because of that accident. I am so irritated with this job. Another reason they would want to let me go is because I left work for a few months this summer because I couldn't walk anymore due to pain. I finally came back after the thought of losing my job and having no benefits. I filed for SSD , which was denied because I'm back to work. I have about another 30 days left for an appeal. I really want to leave this job because of what I've been through. When I came back they asked me if I was taking any pain pills and I said yes. They said if I were taking them at work, they'd have to give me a different job to do. I just told them I don't take them at work and that was all they needed.
Your theory seems right on as far as the pain, I'm am going to research the crushing injuries. I have had one EMG, but it was almost like the doc was flying through it too fast. I am having another one done in a couple weeks because I've noticed a large increase in pain, tingling and numbness from my back, down through my rear, down the leg and into the foot.
Now, is there anything that can be done to fix nerve damage or is it a matter of coping with it thru meds, TENS, PT, etc. I just want to have it improve as much as possible.
I called a pain clinic today, they were closed but I will call again tomorrow. I am anxious to go and see what they can do for me.
On a different note, today was not so good at work. The boss wanted to make me go work with the same type of machine that crushed me. I told him no, and he basically said that it was part of my job and that I should think about it. Again, I said no thanks I'll pass. Mind you, this place is not run by the brightest people, but I thought them just asking that was way out of line. They will probably try and fire me for it. I don't get along with most people that I work with and its mostly because of that accident. I am so irritated with this job. Another reason they would want to let me go is because I left work for a few months this summer because I couldn't walk anymore due to pain. I finally came back after the thought of losing my job and having no benefits. I filed for SSD , which was denied because I'm back to work. I have about another 30 days left for an appeal. I really want to leave this job because of what I've been through. When I came back they asked me if I was taking any pain pills and I said yes. They said if I were taking them at work, they'd have to give me a different job to do. I just told them I don't take them at work and that was all they needed.
Amsterdam
10-06-2005, 07:35 PM
Since this job is managed so bad, as soon as I told them what meds I was on, everyone on the job would know about it. I have enough to deal with to have people constantly talking about me being on meds.
If they try and fire me over not using the machine, which my reason was, I felt it was unsafe, then I guess I'll need to have a good atty on this. The union I'm in sucks, and they could care less what the company does to me.
Sorry to burden everyone who reads this, but I am just stressed out beyond belief. Everyday I come to work I feel like it'll be my last. I had a house I wanted to get, but now I think I'll have to forget about it because of this recent issue over the machine. I feel horrible and I don't know how much longer I can be put through this. If anyone has any thoughts in general, I would be so thankful.
Sorry for taking up so much space with this.
If they try and fire me over not using the machine, which my reason was, I felt it was unsafe, then I guess I'll need to have a good atty on this. The union I'm in sucks, and they could care less what the company does to me.
Sorry to burden everyone who reads this, but I am just stressed out beyond belief. Everyday I come to work I feel like it'll be my last. I had a house I wanted to get, but now I think I'll have to forget about it because of this recent issue over the machine. I feel horrible and I don't know how much longer I can be put through this. If anyone has any thoughts in general, I would be so thankful.
Sorry for taking up so much space with this.
Nana Gormley
10-23-2005, 10:27 AM
Four years ago, when I was taking Endo brand MSContin (an extended release morphine generic), my local pharmacy switched the brand to Roxanne. Needless to say, I went into withdrawal. As soon as I figured out what was going on, I went back to the pharmacy and was told that I was s.o.l until the next month. I am lucky enough to go to a great PM doc and he managed to keep me somewhat covered using a combination of breakthrough meds for that month (until my insurance company would accept another Rx the following month). I was naive enough then to think I could give them the Roxanne back and they would give me the Endo. I also went on line (after the pharmacy told me that all ER drugs are the same) and found out that NO they are not.
I dumped the "local" pharmacy (I would have gotten greater compassion from a doorknob) and called the Endo company. I explained my problem - that I could only take their brand and could they tell me what pharmacy in my area carried it. Well, they told me they sold to middlemen and the middlemen supplied the pharmacies but that they would make a few calls and get back to me.
Within the hour, they called back and gave me the name of three pharmacies in my area that would guarantee me the Endo brand every month. I've been with one of them ever since. They got me Endo brand every month for three years and I never had to go through that experience again. I fill all of my meds with them even though I have to go out of my way. They are a "mom and pop" concern and have never made me feel uncomfortable or questioned my doctor's Rx. When my meds changed to Avinza, I notified them and they always have it for me when I go in. I would travel hours to patronize them if I had to.
I feel very badly for those of you who have to deal with pharmacies who seem to go out of their way to make your lives miserable. Dealing with chronic pain is bad enough for us but then I read about or hear about clerks who either are morons without the basic drug knowledge of a philodendron (one of these read the label on the Rx he was bagging and told my friend that he was an addict in front of an entire store full of his friends and neighbors) or just outright lie so that you stop asking them questions that are embarrassing them. "Oh, you're the only one who has ever had this reaction. All these extended release generics work the same. It's not the drug, it's you." Duh, no it's not.
I have found that when I have a problem with a drug I call the manufacturer who in Endo's case came through for me wonderfully.
Sorry this turned into a novel, but I hope my experience helps someone else.
NG
I dumped the "local" pharmacy (I would have gotten greater compassion from a doorknob) and called the Endo company. I explained my problem - that I could only take their brand and could they tell me what pharmacy in my area carried it. Well, they told me they sold to middlemen and the middlemen supplied the pharmacies but that they would make a few calls and get back to me.
Within the hour, they called back and gave me the name of three pharmacies in my area that would guarantee me the Endo brand every month. I've been with one of them ever since. They got me Endo brand every month for three years and I never had to go through that experience again. I fill all of my meds with them even though I have to go out of my way. They are a "mom and pop" concern and have never made me feel uncomfortable or questioned my doctor's Rx. When my meds changed to Avinza, I notified them and they always have it for me when I go in. I would travel hours to patronize them if I had to.
I feel very badly for those of you who have to deal with pharmacies who seem to go out of their way to make your lives miserable. Dealing with chronic pain is bad enough for us but then I read about or hear about clerks who either are morons without the basic drug knowledge of a philodendron (one of these read the label on the Rx he was bagging and told my friend that he was an addict in front of an entire store full of his friends and neighbors) or just outright lie so that you stop asking them questions that are embarrassing them. "Oh, you're the only one who has ever had this reaction. All these extended release generics work the same. It's not the drug, it's you." Duh, no it's not.
I have found that when I have a problem with a drug I call the manufacturer who in Endo's case came through for me wonderfully.
Sorry this turned into a novel, but I hope my experience helps someone else.
NG
wildamber
10-25-2005, 09:57 PM
I see these R Older Post's here,but I also wanna say what I went through W-generic OC's not long ago,for anyone else Out there Wondering???
I had PU my Rx and latter found they were these OVAL things,they sure Did Not Smell like my reg. brand at all,I was allready worried at that point.But hey I gave it a shot,what choice did I have?None!
Well it wasn't long after that I Knew it was Bad,I had thee Worst tummy Ache,and I swear Iv'e never Pooped so much in my Life,I was Full Of Poo!
After a few day's of hoping it was a tummy bug,I called My Dr. but they did NOTHING at all for Me.I had to wait till my next visit,to get a new script.
Well even though my Script say's "Brand Name Only",I Still get the Generic for a few months out of the year,Spend down stuff,so far these Generics have been OK...
I had PU my Rx and latter found they were these OVAL things,they sure Did Not Smell like my reg. brand at all,I was allready worried at that point.But hey I gave it a shot,what choice did I have?None!
Well it wasn't long after that I Knew it was Bad,I had thee Worst tummy Ache,and I swear Iv'e never Pooped so much in my Life,I was Full Of Poo!
After a few day's of hoping it was a tummy bug,I called My Dr. but they did NOTHING at all for Me.I had to wait till my next visit,to get a new script.
Well even though my Script say's "Brand Name Only",I Still get the Generic for a few months out of the year,Spend down stuff,so far these Generics have been OK...
Cats Meow
11-18-2005, 04:27 AM
I too just started taking the generic Oxy, the ovals made by TEVA, I don't think they work near as well as the Endo's I was previously taking. I also started noticing a strange smell, it's non describable, but it is similar, but much stronger then the way the pills smell. Has anyone else noticed this with the TEVA brand? Previously I was taking 2 40 mg Oxy Endo's in the day, and 1 40mg about 10 hours later, they seemed to work better and no smell. About 6 months ago generic 40 mg of Oxycontin became available, I noticed a slight difference in strength, but I contributed that to tolerance, I've been on Oxycontin for 2 years now for severe back pain. I can't wait to finish this bottle and talk to my Dr. and try to get brand name Oxy, I hate this smell.

