CPer
07-19-2002, 12:41 PM
Hi all,
I’ve been reading the posts for a few days and this seems like a “safe” place to get good pain management advice.
My story: I’m a 44 year-old male from Ohio. I’ve had “mild”spastic hemiplegic cerebral palsy from birth. This means that my left side is markedly weaker than my right, and the large muscles in my left arm, leg and back are spastic (I cannot straighten my left arm or leg, and I have scoliosis—which is the major source of my pain). I work full time as a project manager for a government agency, I’m married and have three kids: 18, 9 and 4.
I never experienced any sort of pain associated with CP until 1995. I was a world-class “disabled” cyclist and was in training for the 1996 Paralympics in Atlanta when I ripped my left Achilles tendon in two. Post-op, my ortho surgeon prescribed 5/250 Lortab every 4 hrs PRN. During recovery I had an incident where I was driving, turned my head to check traffic, and my head “froze” in the twisted position until I could drive myself to the ER. A CT scan demonstrated mild cervical stenosis. Within two weeks I also experienced stabbing pain in my left rhomboid (upper back) muscle. Tests showed that scoliosis was not only causing more stenosis down my spine, but the “spastic” muscles were beginning to tear from the increased tone caused by training. I rode my bike for the last time in October 1995.
I exhausted my “supply” of PT visits paid for by my insurer and was placed on a regimen of Zanaflex, with the 5/250 Lortab continuing. The Zanaflex allowed sleep, but did nothing for pain. The physiatrist ordered a TENS unit, which proved to be totally ineffective, even though I gave it my best shot for four months. Later, I discovered that TENS is contraindicated in my type of neuro disorder. :-( With concurrent visits to the ortho and physiatrist, I started Fentanyl patches (don’t remember the dosage). That was short-lived as I had the same “contact dermatitis” with the patch adhesive as I had with. The analgesic properties of Fentanyl were lost on me as well. I was temporarily referred to a PM doc in Central Ohio (who has subsequently lost his license to practice for reasons of bad patient management, bad records management and the discovery of cocaine in his back seat during a traffic stop). His was my first experience with facet joint injections. Obviiously the guy was a quack, but I had been referred. How was I to know his rep?
Anyway, back to my GP, who suggested OcyContin 40mg BID, nothing for breakthrough. After the “big scandal” broke in the media regarding OC abuse in West Virginia and Ohio, he got anxious and referred me to another PM doc. This new fellow, who barely spoke English, assured me that HE WOULD FOREVER AND EVER relieve me of any and all pain I would ever experience from that point forward (sarcasm, yes).
After a series of ineffective FJ injections, nerve blocks, you name it, we both got fed up with each other and I began seeing another doc in his practice. This guy was articulate, empathetic and completely trusted my own assessment of my pain. I thought I’d finally found who I needed. He ordered a full spinal CT. Lo and behold, I now had “moderate” bulges and stenosis from L1-S5.
I told him that 40mg every twelve wasn’t cutting it—I was getting “breakthrough” at eight hours. We went to 40mg OC TID and 5mg Roxicodone (30/month) for “breakthrough”. This was in October of last year. Now I’m finding that eight hours is too short and I blow through 30 tablets of 5mg Roxicodone pretty quick. Most mornings, if I have meds available that month, I have to “bolus” with 15mg of Roxicodone every morning just to be able to get to work.
I have a close friend who is a pharmacist, and, of all things, an “addiction specialist” who monitors my meds with me. His feeling is that the “disease” is just following a natural progression and that I should get the PM doc to up my daily dose to 180mg OC (3X60) and get a larger volume of meds for breakthrough. My questions:
1) Does this seem like a reasonable “ramp up” of dosage over the time-frame stated?
2) I wrote a letter to the doctor two weeks prior to my next appointment, outlining the situation and giving my pharmacist friiend’s recommendation and phone number. Does this appear like “drug seeking”?
3) Do any of you who visit PM clinics find that they are over-booked with patients to the point that the doc can only give you a couple minutes?
4) Finally, has anyone ever had experience with using dextromethorphan (the active ingredient in Robitussin cough syrup) to assist the pharmacokinetics of opiate pain relievers?
Thank you all for your help and time!
I’ve been reading the posts for a few days and this seems like a “safe” place to get good pain management advice.
My story: I’m a 44 year-old male from Ohio. I’ve had “mild”spastic hemiplegic cerebral palsy from birth. This means that my left side is markedly weaker than my right, and the large muscles in my left arm, leg and back are spastic (I cannot straighten my left arm or leg, and I have scoliosis—which is the major source of my pain). I work full time as a project manager for a government agency, I’m married and have three kids: 18, 9 and 4.
I never experienced any sort of pain associated with CP until 1995. I was a world-class “disabled” cyclist and was in training for the 1996 Paralympics in Atlanta when I ripped my left Achilles tendon in two. Post-op, my ortho surgeon prescribed 5/250 Lortab every 4 hrs PRN. During recovery I had an incident where I was driving, turned my head to check traffic, and my head “froze” in the twisted position until I could drive myself to the ER. A CT scan demonstrated mild cervical stenosis. Within two weeks I also experienced stabbing pain in my left rhomboid (upper back) muscle. Tests showed that scoliosis was not only causing more stenosis down my spine, but the “spastic” muscles were beginning to tear from the increased tone caused by training. I rode my bike for the last time in October 1995.
I exhausted my “supply” of PT visits paid for by my insurer and was placed on a regimen of Zanaflex, with the 5/250 Lortab continuing. The Zanaflex allowed sleep, but did nothing for pain. The physiatrist ordered a TENS unit, which proved to be totally ineffective, even though I gave it my best shot for four months. Later, I discovered that TENS is contraindicated in my type of neuro disorder. :-( With concurrent visits to the ortho and physiatrist, I started Fentanyl patches (don’t remember the dosage). That was short-lived as I had the same “contact dermatitis” with the patch adhesive as I had with. The analgesic properties of Fentanyl were lost on me as well. I was temporarily referred to a PM doc in Central Ohio (who has subsequently lost his license to practice for reasons of bad patient management, bad records management and the discovery of cocaine in his back seat during a traffic stop). His was my first experience with facet joint injections. Obviiously the guy was a quack, but I had been referred. How was I to know his rep?
Anyway, back to my GP, who suggested OcyContin 40mg BID, nothing for breakthrough. After the “big scandal” broke in the media regarding OC abuse in West Virginia and Ohio, he got anxious and referred me to another PM doc. This new fellow, who barely spoke English, assured me that HE WOULD FOREVER AND EVER relieve me of any and all pain I would ever experience from that point forward (sarcasm, yes).
After a series of ineffective FJ injections, nerve blocks, you name it, we both got fed up with each other and I began seeing another doc in his practice. This guy was articulate, empathetic and completely trusted my own assessment of my pain. I thought I’d finally found who I needed. He ordered a full spinal CT. Lo and behold, I now had “moderate” bulges and stenosis from L1-S5.
I told him that 40mg every twelve wasn’t cutting it—I was getting “breakthrough” at eight hours. We went to 40mg OC TID and 5mg Roxicodone (30/month) for “breakthrough”. This was in October of last year. Now I’m finding that eight hours is too short and I blow through 30 tablets of 5mg Roxicodone pretty quick. Most mornings, if I have meds available that month, I have to “bolus” with 15mg of Roxicodone every morning just to be able to get to work.
I have a close friend who is a pharmacist, and, of all things, an “addiction specialist” who monitors my meds with me. His feeling is that the “disease” is just following a natural progression and that I should get the PM doc to up my daily dose to 180mg OC (3X60) and get a larger volume of meds for breakthrough. My questions:
1) Does this seem like a reasonable “ramp up” of dosage over the time-frame stated?
2) I wrote a letter to the doctor two weeks prior to my next appointment, outlining the situation and giving my pharmacist friiend’s recommendation and phone number. Does this appear like “drug seeking”?
3) Do any of you who visit PM clinics find that they are over-booked with patients to the point that the doc can only give you a couple minutes?
4) Finally, has anyone ever had experience with using dextromethorphan (the active ingredient in Robitussin cough syrup) to assist the pharmacokinetics of opiate pain relievers?
Thank you all for your help and time!
Sponsor
Shaman
07-19-2002, 06:40 PM
Cper-
Do any of these drs have experience in treating those with CP? I am a 33 year old female with CP (right side), and I've really begun to think that CP has a wider ranging effect than I've been led to believe. Every person I know with CP has problems with pain management in that they don't seem to have "normal" reactions to the drugs. I myself will not even consider having anything done under local anesthesia because it is useless to me. I'm wondering if what you need is someone with a lot of experience with CP injury recovery/treatment. Perhaps you could contact United Cerebral Palsy?
I have no idea if the drugs you are taking are "excessive", but I believe that you DESERVE adequate pain management. I've been left to suffer because people did not believe I could still be in pain, and I know how frustrating that is.
I hope you find an answer.
Shannon
Do any of these drs have experience in treating those with CP? I am a 33 year old female with CP (right side), and I've really begun to think that CP has a wider ranging effect than I've been led to believe. Every person I know with CP has problems with pain management in that they don't seem to have "normal" reactions to the drugs. I myself will not even consider having anything done under local anesthesia because it is useless to me. I'm wondering if what you need is someone with a lot of experience with CP injury recovery/treatment. Perhaps you could contact United Cerebral Palsy?
I have no idea if the drugs you are taking are "excessive", but I believe that you DESERVE adequate pain management. I've been left to suffer because people did not believe I could still be in pain, and I know how frustrating that is.
I hope you find an answer.
Shannon
davidc66
07-19-2002, 08:14 PM
Hi CPer, Welcome, Tolerance is part of the teritory, I think especially with Oxycontin. From what I have seen and experienced your tolerance has actually developed pretty slowly.
I think most good PM docs are over booked. If I see my doc and he wants me back in 30 days it's just not possible to schedule, they will squeeze me in but my doc is booked about 90 days out for new patients. They do leave time in every day to handle the emergencies that pop up especiacially during titration periods.
Last year I read about several new meds in clinical trials that were compounded with Dex. It''s believed to be a good potentiator. They think it slows tolerance and also adds an abilty to block the NMDA receptor. Only Methadone and Levo Dromoran have this ability. It's what they believe makes meth work better on neuropathic pain.I've tried it and didn't notice much, I don't have neuropthic pain though.
I've met folks on the internet that have Hydrocodone compounded with dex to create a longer lasting version of Hydro. I have also met folks that were told by their doc to add dex as a potentiator to increase the effectivesness of morphine. I would talk to your doc about doing it though. Most of the info I have seen has been about morphine and dex and very little about oxy and dex.
The increase sounds reasonable and the strength of your BT meds should increase along with your base meds. If your taking 180 mgs a day 5mgs isn't squat as far as an increase to manage BT pain. You can get Roxicodone in 15 and 30 mgs tabs or liquid Oxyfast or the generic Oxydose. Purdue recmends sticking with one of their oxy products
Personally I think if you use a different BT med than your base med you getter better pain relief through covering a broader range of opiate receptors. You also cut down on side effects of a high dose of one med. Morphine is my base med and I used to use Roxicodone 30 but now use dilaudid because it's cheaper.
I'm in the process of doing an Intrarthecal pump trial to deliver morphine and other meds directly to my spine, I'm fused from L1-S1. My neice is wheelchair bound and my brother is considering the pump to deliver Baclofin, some meds are much more efective when delivered to the spinal cord. They use about 1/300 of the oral dose of morphine when delivered intra-thecally. The pump may be an option worth looking into.
Changing base meds may aslo help the tolerance issue. I've been on Kadian, very long lasting morphine, up to 24 hours for 11 months and haven't needed an increase. I was able to stay on the same dose of methadone for a year but the side effects just got worse for me.
You may respond better to morphine and slow the tolerance down a bit by switching.You certainly haven't maxed the dose of OxyC though. There is plenty of room to adjust it. I don't see how having a pharmacist willing to help in your PM could be a problem. It would certainly help to keep your pharmaciist in the loop.
I think we all sweat a bit too much when it comes to asking for an increase. Hopefully your doc is willing to make needed adjustments as your condition progreses. Take care, David
[This message has been edited by davidc66 (edited 07-19-2002).]
I think most good PM docs are over booked. If I see my doc and he wants me back in 30 days it's just not possible to schedule, they will squeeze me in but my doc is booked about 90 days out for new patients. They do leave time in every day to handle the emergencies that pop up especiacially during titration periods.
Last year I read about several new meds in clinical trials that were compounded with Dex. It''s believed to be a good potentiator. They think it slows tolerance and also adds an abilty to block the NMDA receptor. Only Methadone and Levo Dromoran have this ability. It's what they believe makes meth work better on neuropathic pain.I've tried it and didn't notice much, I don't have neuropthic pain though.
I've met folks on the internet that have Hydrocodone compounded with dex to create a longer lasting version of Hydro. I have also met folks that were told by their doc to add dex as a potentiator to increase the effectivesness of morphine. I would talk to your doc about doing it though. Most of the info I have seen has been about morphine and dex and very little about oxy and dex.
The increase sounds reasonable and the strength of your BT meds should increase along with your base meds. If your taking 180 mgs a day 5mgs isn't squat as far as an increase to manage BT pain. You can get Roxicodone in 15 and 30 mgs tabs or liquid Oxyfast or the generic Oxydose. Purdue recmends sticking with one of their oxy products
Personally I think if you use a different BT med than your base med you getter better pain relief through covering a broader range of opiate receptors. You also cut down on side effects of a high dose of one med. Morphine is my base med and I used to use Roxicodone 30 but now use dilaudid because it's cheaper.
I'm in the process of doing an Intrarthecal pump trial to deliver morphine and other meds directly to my spine, I'm fused from L1-S1. My neice is wheelchair bound and my brother is considering the pump to deliver Baclofin, some meds are much more efective when delivered to the spinal cord. They use about 1/300 of the oral dose of morphine when delivered intra-thecally. The pump may be an option worth looking into.
Changing base meds may aslo help the tolerance issue. I've been on Kadian, very long lasting morphine, up to 24 hours for 11 months and haven't needed an increase. I was able to stay on the same dose of methadone for a year but the side effects just got worse for me.
You may respond better to morphine and slow the tolerance down a bit by switching.You certainly haven't maxed the dose of OxyC though. There is plenty of room to adjust it. I don't see how having a pharmacist willing to help in your PM could be a problem. It would certainly help to keep your pharmaciist in the loop.
I think we all sweat a bit too much when it comes to asking for an increase. Hopefully your doc is willing to make needed adjustments as your condition progreses. Take care, David
[This message has been edited by davidc66 (edited 07-19-2002).]
CPer
07-31-2002, 01:58 PM
Thanks to everyone who replied to my initial post (thanks, too, to Shaman for the reply on the CP forum).
I wanted to wait until I met with the PM doc to repost. This is what he said in response to my request for a 50% increase in baseline and breakthrough meds:
He felt a 50% jump in OxyContin was too much. He said, "You'll feel great for a short while, but you're going to be telling me the same story (tolerance to baseline meds) in about three months. Let's bump your OC by 25% (to 150 mg/day from 120mg/day) and give you 90 tabs/month of Methadone for breakthrough. The methadone will hit different NMDA receptors than the OC, so by making the breakthrough drug different from the maintenance med, there should be less tolerance."
He also said that he "hated" OxyContin and Oxycodone in general, because tolerance develops so quickly. He told me the only reason he had me on OC at this point was that I was already taking the med when I came to him. It would not have been his first choice as a maintenance med.
We agreed to try this regimen for a couple months, with the understanding that the next step would be the intrathecal pump.
My pharmacist friend said that methadone was a "great analgesic", but I've found the daytime drowsiness to be overwhelming with this medication. Any like experiences? I also related some of the "war stories" from this board about intrathecal caths pulling out. He said that it was a stong possibility during the trial, but after the pump is installed the cath is achored pretty well.
-CPer
I wanted to wait until I met with the PM doc to repost. This is what he said in response to my request for a 50% increase in baseline and breakthrough meds:
He felt a 50% jump in OxyContin was too much. He said, "You'll feel great for a short while, but you're going to be telling me the same story (tolerance to baseline meds) in about three months. Let's bump your OC by 25% (to 150 mg/day from 120mg/day) and give you 90 tabs/month of Methadone for breakthrough. The methadone will hit different NMDA receptors than the OC, so by making the breakthrough drug different from the maintenance med, there should be less tolerance."
He also said that he "hated" OxyContin and Oxycodone in general, because tolerance develops so quickly. He told me the only reason he had me on OC at this point was that I was already taking the med when I came to him. It would not have been his first choice as a maintenance med.
We agreed to try this regimen for a couple months, with the understanding that the next step would be the intrathecal pump.
My pharmacist friend said that methadone was a "great analgesic", but I've found the daytime drowsiness to be overwhelming with this medication. Any like experiences? I also related some of the "war stories" from this board about intrathecal caths pulling out. He said that it was a stong possibility during the trial, but after the pump is installed the cath is achored pretty well.
-CPer
fallllea
08-02-2002, 08:19 PM
I may be wrong but I am not sure meth is a great med for break-thru.I know it is long acting and builds up in the system.This could cause the drowsy effects plus taking time to get used to.You may get advice from david and the others on this but I would think a faster acting-short term med would be a better choice for break-thru.I would think meth is better for base.Randy