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Old 08-06-2008, 07:48 AM   #1
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Aug 6th 2008 Office Visit Update

Today's visit was very interesting and I am not sure how I feel.

My doctor has decided after talking to a pain mgmt doctor that he wants no changes for one month on my long acting medication. They want me to get down to 1 percocet a day as a breakthru. They feel that my percocet is no longer a breakthru it is becoming part of my daily regimen. I understand what they are saying but if your long acting meds does not cover your pain how do they expect me to lower the percocet? My hubby said, she truly is not at this point and the doc responded I want you to try it and give it a chance. He does not expect it overnight. I said, if you want me to do this of course I will do what you ask but please understand that I wake up vomiting from pain and take my breakthru first thing in the morning to gain control over my pain so this would leave me with no breakthru's and my day has not even started. He then said only use a 2nd one as an emergency - matter of last resort.

My gp has put in a referral to this pain mgmt doctor who has agreed to see me one time to help stabilize me. I have to bring my pain log with me. I am going to write a book and include everything I do to control my pain. Personally, I will go with the program but how can a doc tell after one appt what your needs truly are? I may have to go do something big the day before so he can see my pain full blown. LOL

This is interesting. I was taking my meds as follows:

20 mg. @ 2 am
10 mg @ 8 a.m.
20 mg. @ 2 pm.
10 mg. @ 8 pm.

The pain mgmt doctor wants me on 20 mg. x 3 a day so now my meds will be

20 mg. @ 5 am.
20 mg. @ 1 pm.
20 mg. @ 8 pm.

Apparently, help me understand this Steve and Exec or anyone else, that it is better to take my meds in 20 mg. increments than the 10 mg. increments. It will give me better long acting releif.

In one month my doctor with the help of the pm doc will adjust my meds accordingly.

Today my blood pressure was 130/86 - it is the best it has been in a looooooong time.

Thanks for listening and any words of wisdom will be appreciated.

FYI - I think what upsets me is that my raise in medicine was just lowered by them taking away the percocet. I took 3 percocets 10-325. They just raised me from 40 to 60 mg. of oxy.

Last edited by ms_west; 08-06-2008 at 07:54 AM.

 
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Old 08-06-2008, 08:20 AM   #2
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Re: Aug 6th 2008 Office Visit Update

Wow Pepper,

Honey I think we are both getting the jagged end of the sword with our Doctors!!

It is totally awful to live like this. I really do not know what to say. What do they expect you to do? WHat do my docs expect me to do?

We have no darn choice I guess because they are the ones that ultimatly have the control.

I am at a loss for words my friend ... but I am praying for you!

Chrissy

 
Old 08-06-2008, 08:29 AM   #3
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Re: Aug 6th 2008 Office Visit Update

Pepper, I am speechless! I truly cannot understand your doc's logic (or lack thereof) in doing this. It's as if he is asking you to take a step backwards. It makes no sense to tell you one minute that your percocet is no longer a BT med (hence needing it on top of your LA med to sustain relief) and then not increasing your LA med, so that you won't need as much BT.

Where does he think this miracle solution will come from? He has taken meds away from you and wants you to see if this works better???

I know you are stuck with using your plan doc, in order to get coverage, but this calls for a trip outside of the plan as far as I'm concerned. (Not to mention a letter to the medical director at K.)

I honestly don't know what else to say about this. I'm going to have to think about this for a bit. I'm just too dumbfounded. I'm not sure I'm even making sense! lol

I'm so sorry, hon. I will continue to pray and I hope someone like Steve or Ex can sort this out better than I can. God Bless you sweetie. Warm hugs, CMP/MM

 
Old 08-06-2008, 08:30 AM   #4
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Re: Aug 6th 2008 Office Visit Update

Hi Pepper.....Sorry to hear about this up & down approach they are taking with you. Rule # 1 in pain mgt is NOT to change things if they are doing well. I realize you aren't doing great by any means, but many parts of your program were working. You can give it all a try, and then request to change back if it doesn't work...I hate that you are a potential guinea pig, but it's the Doc's bat and ball. I've gone through similar things in the past and I just grin and bear it as best I can and then when the time comes, I'm very upfront with what I'd like to happen. I think you are doing the right thing by talking descriptively about how bad your pain is.

Honestly, I think the higher dosages, 3 X will be fine. Those 10s are so darn weak that @ .8 per hour, I'm not sure it does much. When I was on 10mg, I couldn't even tell that I took it. I've said all along that the 10mg you were taking before bed wasn't enough, and that there was too big a gap between that dose and the AM dose. I understand what you were trying to do as it seemed logical, but in reality, your body doesn't care if it's sleeping or not....It requires your BPL to be @ a certain level, or you'll experience WD symptoms. This is probably why you felt so bad in the AM.

I am concerned about the Percs, however. I understand what the Doc is saying about becoming part of your daily regimen, but in all honesty, it doesn't sound like he understands tolerance. You need these meds for BT, and 1-2 per day is NOTHING. I'm wondering if this GP is in over his head with your case. I'm sure he's a good Doc, and you like him a lot, but GPs tend to get nervous with higher levels.....Whereas PM Docs, especially anesthesiologists, aren't afraid to use the stronger meds and higher doses.

I'm not criticizing you, but it was probably a mistake to tell him that you take the Percs at set times to avoid certain symptoms....That's a dead give away to dependance. This is where he probably got the idea that it's now part of your daily regimen. Again, just trying to help by moving forward. When ever my Doc tries to pin me down on how often I take my BT meds, I tell him it varies a lot and there is no real "average"....Some days it's worse (or better) than others. Since you regimen has changed, now is a good time to tell him that things have changed and your pain is unpredictable and that it varies a lot....That you need the meds for this reason. I'd also tell him that NOTHING is worse than having to ration one's meds and thus, not be able to do things with family and etc. I told my Doc this not long ago when I needed an increase on my BT and he jumped in and agreed.

Hope this helps some....Please let me know where I can help further.

Regards,

Ex

Last edited by Executor; 08-06-2008 at 08:34 AM.

 
Old 08-06-2008, 08:52 AM   #5
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Re: Aug 6th 2008 Office Visit Update

Quote:
Originally Posted by 123dietdrpepper View Post
Apparently, help me understand this Steve and Exec or anyone else, that it is better to take my meds in 20 mg. increments than the 10 mg. increments. It will give me better long acting releif.
I forgot something, so thought I'd submit a new post to ensure this gets read by you Pepper.....

Let's walk through this......

Technically speaking, the OCs are supposed to be 12 hours, meaning a certain % is released up front and then consistent amounts throughout the remaining time. There has been some debate on this board about exactly what that release schedule is, but really, it's immaterial. The point is it's designed to be released over 12 hours. Now....Many in PM say it's more like 8-10 hrs, with each person being different, depending on metabolism & etc.

So, if you were taking something 4 X and now you're taking the same overall amt 3 X, the only difference is that your intervals are in higher dosages...i.e. stronger. The end result, I think, will be more consistent BPL, and more "punch" @ each interval. As I said previously, those 10mg don't do much because the amt released is so low, it probably falls below your threshold of effectiveness. Conversely, the 20mg has more punch...Twice as much.

Also, when you were taking it 4 X, you invariably had some "overlap"....Meaning that a certain % of each dose was overlapping with the next (or previous) dose....And depending on whether it was a 10 or 20, this overlap could have been stronger one time or another. Thus, again, your new regimen will be more consistent, which I think, is a huge plus.

Hope this helps.

Regards,

Ex

 
Old 08-06-2008, 09:12 AM   #6
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Re: Aug 6th 2008 Office Visit Update

Exec, the only time I take my percocets is in the morning between 4 and 8 when I first wake up. The 2nd dose varies. If one is vomiting and pain is at a 8/9/10 in the morning. Wouldn't it stand to reason that one would take a percocet? For some reason if I sleep for a stretch of time, my pain flies up the scale. I think it has to do with being still and/or my med dosage is incorrect.

Also, he brought the daily regimen up before I even said this. I feel he got this info from the pain mgmt doc based on what he read to me from the pm doctor. The pm doc felt that the percocet needs to not be part of the daily regimen. We need to reduce it. My feeling is that the daily long acting must be stronger then.

Thanks for the tidbit about making sure my BT are not taken at the same time because it can be looked at as tolerance problem. Gosh so much to keep in mind -- is pm a game?? LOL

It gives me a little hope that maybe the 20 mg. will be stronger than the 10 mg. Maybe this will give me a little more balance to my meds.

I tend to agree my doc is over his head and he in a way has admitted to that he has consulted pharmacists, neurologists, and now a pm doctor. It is unfortunate that Kaiser does not have pm docs for their patients and they put it back on the gp who is not trained in this area. I really only have two choices to pay off plan to see a doctor but then this HMO will charge me the full amounts for meds because they were prescribed off plan. Honestly, I can't afford oxycontin. Second, I can try a different GP. My lady receptionists say that this is the only doc in this center currently that will prescribe narctocs for cp patients. I may have to switch to a larger center but that would be a gamble as far as whether the doc would prescribe or not. I guess I have a third choice to go to membership services and try and build a case to see someone off plan and have them reimburse me. Oh the joys of being a cper.

CMP/Chrissy, yes I am hurt more than angry. I feel like my doc is very inconsistent - one day he is willing to prescribe but as soon as I start feeling some better not even stabilized yet he takes away my meds. Very frustrating and certainly not good for the body.

CMP it helps to know that I am not the only one dumbfounded. Now I don't feel so alone.

Chrissy, yes, sadly in the end they have the control and we are the ones to live with the daily ramification of those decisions.

I guess for right now I have to try and do what he asks and document, document, document in my pain log. I will pray that this meeting goes smoothly and that the pm doc offers some valuable advice to my doctor.

You are the best for getting back to me so soon.

Last edited by ms_west; 08-06-2008 at 09:16 AM.

 
Old 08-06-2008, 09:26 AM   #7
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Re: Aug 6th 2008 Office Visit Update

Thank you for your detailed 2nd post Exec. It does make some sense. The pm doc wrote to my doc that the 10 mg doses 4 x a day was causing me increased pain levels. Maybe this is what she mean't. I want you to know I appreciate your insight and comments. They are extremely helpful.

I have been thru alot in my life but this pm stuff is way over my head and very confusing. Unfortunately, I believe it is going to be a part of my life and I need to adjust and accept it. However, it is hard to accept when ones pain is all over the charts. Thanks again my friend.

 
Old 08-06-2008, 09:33 AM   #8
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Re: Aug 6th 2008 Office Visit Update

WOW....You've got one involved case....I'll try to address bit by bit......


Quote:
Originally Posted by 123dietdrpepper View Post
Exec, the only time I take my percocets is in the morning between 4 and 8 when I first wake up. The 2nd dose varies. If one is vomiting and pain is at a 8/9/10 in the morning. Wouldn't it stand to reason that one would take a percocet?
Absolutely! Unfortunately, because you've been honest about it, they've turned that back around on you. I'd take the med in a heartbeat...Maybe two!

Quote:
For some reason if I sleep for a stretch of time, my pain flies up the scale. I think it has to do with being still and/or my med dosage is incorrect.
Yes....Probably a combination of both....Especially, your BPL dropping....I was the same way. That's why now I take my 1 of my 2 LA doses right @ bedtime. The small part that is immediately released makes me very drowsy. I have found this to be much better.

Quote:
The pm doc felt that the percocet needs to not be part of the daily regimen.
This is because he understands PM. I think you'll just have to keep documenting like you said and keep plodding along...Hopefully, the GP will listen....I think he will. He sounds like a person who isn't afraid to get help, but is somewhat uncomfortable in scripting large doses.

Quote:
Thanks for the tidbit about making sure my BT are not taken at the same time because it can be looked at as tolerance problem. Gosh so much to keep in mind -- is pm a game?? LOL
I hate to admit it, but to a certain extent, it can be @ times. I think most of it is a "perception" problem, more than anything.

Quote:
It gives me a little hope that maybe the 20 mg. will be stronger than the 10 mg. Maybe this will give me a little more balance to my meds.
I'll be surprised if it doesn't help some. You may need another bounce up in LA, but the 20 should definitely be an improvement over the 10.

Quote:
I tend to agree my doc is over his head and he in a way has admitted to that he has consulted pharmacists, neurologists, and now a pm doctor. It is unfortunate that Kaiser does not have pm docs for their patients and they put it back on the gp who is not trained in this area. I really only have two choices to pay off plan to see a doctor but then this HMO will charge me the full amounts for meds because they were prescribed off plan. Honestly, I can't afford oxycontin. Second, I can try a different GP. My lady receptionists say that this is the only doc in this center currently that will prescribe narctocs for cp patients. I may have to switch to a larger center but that would be a gamble as far as whether the doc would prescribe or not. I guess I have a third choice to go to membership services and try and build a case to see someone off plan and have them reimburse me. Oh the joys of being a cper.
You have no choice, but to stay. Just keep doing what you're doing and maybe when you see the pM Doc, sort of plead with him to talk to your GP in a way to help. Explain to him exactly how bad you are.

Quote:
I feel like my doc is very inconsistent - one day he is willing to prescribe but as soon as I start feeling some better not even stabilized yet he takes away my meds. Very frustrating and certainly not good for the body.
In a very tactful way, I would explain that this "up & down" is really hurting you. Again, you may need to plead a bit.

Quote:
I guess for right now I have to try and do what he asks and document, document, document in my pain log. I will pray that this meeting goes smoothly and that the pm doc offers some valuable advice to my doctor.
Yes, please do. I do think things will work out, but is going to take a little bit of time. Hang in there.

Quote:
You are the best for getting back to me so soon.
Glad I can be of a little help....That's what I'm here for. Take care.

Regards,

Ex

Last edited by Executor; 08-06-2008 at 09:35 AM.

 
Old 08-06-2008, 09:38 AM   #9
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Re: Aug 6th 2008 Office Visit Update

Pepper, After reading what Ex said, I do agree that a 20mg dose gives a better "punch" than a 10mg dose. I guess since you have been accustomed to 4x/day, it just seems strange to go to 3x/day. I was actually at 20mg 3x/day for about 3 years, and it didn't stop being effective til about the last 3-6 months. So, hopefully the consistant 20, 20, 20, will be even more effective than the schedule with the 2 10mg doses in it.

I still think your doc might not understand that the BT med is still a necessity. 2 Percs really is not much at all, in the grand scheme of things. Do you think he might have misunderstood what the PM was trying to say? Because I tend to agree that he is over his head re: pain management, I have to wonder.

Let's hope the meeting goes well and your GP fully conveys your situation and concerns to the PM. Is there any way that you could have a face to face with the PM? I almost think it would give him a truer picture of your needs and your pain. Right now it's like your GP is playing monkey in the middle. And we all know how some things tend to get lost in translation. Could you request an appointment with this PM? I think it would be a help.

Hang in there sweetie. I'll be praying that the 20mg 3x/day takes care of things. If it's any help, I took mine at 8:00 a.m., 4:00 p.m. and 12:00 midnight (roughly). It always worked quite well. Sending lots of hugs, CMP/MM

 
Old 08-06-2008, 09:39 AM   #10
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Re: Aug 6th 2008 Office Visit Update

At this point, if I showed up and my doctor suddenly decreased my meds, I don't know what I would do and I haven't been suffering acutely like you have been. If you made it through without crying, I'm impressed. I think I would have fallen apart.

( ( HUGS) )

Cheri
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Old 08-06-2008, 09:39 AM   #11
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Re: Aug 6th 2008 Office Visit Update

Quote:
Originally Posted by 123dietdrpepper View Post
Thank you for your detailed 2nd post Exec. It does make some sense. The pm doc wrote to my doc that the 10 mg doses 4 x a day was causing me increased pain levels. Maybe this is what she mean't.
I think so....He didn't change your overall amt per day, so that means that PM Doc doesn't subscribe to the the theory that the increased meds overall are causing you more pain.

Quote:
I have been thru alot in my life but this pm stuff is way over my head and very confusing.
I'm here for you...Just let me know where I can help.

Regards,

Ex

 
Old 08-06-2008, 10:06 AM   #12
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Re: Aug 6th 2008 Office Visit Update

Cherish, I think CMP stated it well I was dumbfounded and did not say a word the entire way home. My hubby kept asking me if I was okay. Personally, I just want to curl up and cry but I am trying to be strong for my kids sake.

My hubby said, my doc did not take away the percocet he told me to work towards it. I will work towards it but if I need it; I will take it. I am not suffering.

CMP, I have a referral for one appt. I am waiting to find the date. I have been told that this is to help stabilize me only and that no med changes will happen. Apparently, their is only 1 true pm doc in the east coast for my HMO and he can only act in an advisor capacity.

 
Old 08-06-2008, 10:11 AM   #13
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Re: Aug 6th 2008 Office Visit Update

I want to add what upsets me more than anything is that I have no life on the dose I am because of pain. I only go out of the house to grocery shop and once in awhile to church. I can't go out because of my pain levels. Grocery shopping and church bring it to 8/9's. If I increase activity my pain shoots up and then I am down for 2 to 3 days recovering. Maybe this is natural for CPers....

Look at my vacation as an example: I went on vacation over 2 weeks - this is week 3 of acute pain. For one week of fun, I have had had 3 miserable weeks. Sorry I just had to get that out. It is frustrating.

Last edited by ms_west; 08-06-2008 at 10:12 AM.

 
Old 08-06-2008, 10:45 AM   #14
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Re: Aug 6th 2008 Office Visit Update

Quote:
Originally Posted by 123dietdrpepper View Post
I want to add what upsets me more than anything is that I have no life on the dose I am because of pain. I only go out of the house to grocery shop and once in awhile to church. I can't go out because of my pain levels. Grocery shopping and church bring it to 8/9's. If I increase activity my pain shoots up and then I am down for 2 to 3 days recovering. Maybe this is natural for CPers....
NO, this is not normal for CPers....From what I've learned thus far about your case, is that it appears that you are under medicated. I strongly suspect you need a jump up in OC...To either 30 or 40 three times / day, and then some reasonable med for BT.

Hang in there.

Regards,

Ex

 
Old 08-06-2008, 01:17 PM   #15
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Re: Aug 6th 2008 Office Visit Update

Pepper,
It's not normal. My surgeon finally had the courtesy to tell me that I will live with some degree of pain the rest of my life. Nice, huh? But that doesn't mean that I will be disabled by it. Neither should you be.

YOu know that I had a broken back after my first surgery, followed by the second surgery, a month of a nursing home rehab followed by a week in the hospital for a DVT with clots in both lungs...I have pain every day yes, but I am out working full time! You my dear, are being medically abused. Ex is right, you need to see someone who isn't afraid of giving you enough meds that will allow you to function as a person, wife, and mother. Pepper, you deserve this honey. They aren't doing you any favors by keeping your meds so low, What are they trying to accomplish?

hang in there dear one...i'm praying for you,,,,

 
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