Re: Pain medication??

February 26, 2009

We went to a pain management specialist who worked hand and had with our gastro doc. The fentinal patch did not work. He is now on oxycodone with diladid for break through.

We do not use them daily. We have been told that a low constant dose of methadone is helpful for more constant relief. Try to be referred to a pain management doc who know about PSC.

Subject: Pain medication??To: Date: Thursday, February 26, 2009, 2:40 PM

I was wondering what type of pain medication people are taking?? Mydaughter has constant pain and often nausea that goes with it, whattype of pain medication are some of you taking and how well does itwork?? She feels like her body has gotten used to the pain meds she isusing and it is not that affective any more. She was thinking if shetried something else and alternated between pain meds monthly or so itwould work better. She is aware that pain meds are not good for youbut she says she cannot live in constant pain and if she takes thepain meds at least she can do some things during the day!!!Thanks.Gwynn

February 26, 2009

Gwynn,

I go to pain management as well. I have dilaudid for pain. I have been on the

same dose for 2 years. It still seems to work for me although it doesn't always

have the same kick it used to and occasionally I have to take two pills instead

of one. This was at the suggestion of my pain dr because I didn't want to up

the dose.

I also have a prescription for phenergrin (sp) for nausea which helps a lot. I

think sometimes the nausea is more annoying and frustrating then pain. I didn't

realize how much socializing revolves around food until eating became

unpleasant.

I have to take antibiotics daily to avoid bouts of cholangitis. This may sound

weird but I think that three months of antibiotics have helped with the pain and

nausea. I think the never-ending infections made both problems worse.

Not sure if any of this will help with your daughter. Hope you get some good

ideas and that she'll feel better soon.

Darcy

Sent from my Verizon Wireless BlackBerry

February 26, 2009

Gwynn,

I go to pain management as well. I have dilaudid for pain. I have been on the

same dose for 2 years. It still seems to work for me although it doesn't always

have the same kick it used to and occasionally I have to take two pills instead

of one. This was at the suggestion of my pain dr because I didn't want to up

the dose.

I also have a prescription for phenergrin (sp) for nausea which helps a lot. I

think sometimes the nausea is more annoying and frustrating then pain. I didn't

realize how much socializing revolves around food until eating became

unpleasant.

I have to take antibiotics daily to avoid bouts of cholangitis. This may sound

weird but I think that three months of antibiotics have helped with the pain and

nausea. I think the never-ending infections made both problems worse.

Not sure if any of this will help with your daughter. Hope you get some good

ideas and that she'll feel better soon.

Darcy

Sent from my Verizon Wireless BlackBerry

February 26, 2009

Gwynn,

I go to pain management as well. I have dilaudid for pain. I have been on the

same dose for 2 years. It still seems to work for me although it doesn't always

have the same kick it used to and occasionally I have to take two pills instead

of one. This was at the suggestion of my pain dr because I didn't want to up

the dose.

I also have a prescription for phenergrin (sp) for nausea which helps a lot. I

think sometimes the nausea is more annoying and frustrating then pain. I didn't

realize how much socializing revolves around food until eating became

unpleasant.

I have to take antibiotics daily to avoid bouts of cholangitis. This may sound

weird but I think that three months of antibiotics have helped with the pain and

nausea. I think the never-ending infections made both problems worse.

Not sure if any of this will help with your daughter. Hope you get some good

ideas and that she'll feel better soon.

Darcy

Sent from my Verizon Wireless BlackBerry

February 26, 2009

My husband was on a steady dose of cipro for months to help with infection(s). However, side effects are cediff and becoming resistant to some antibiotics. My husband now often gets MRBE (multiple resistant bacterial ecoli) and has had one good round of cediff. Some of these antibiotics used for long periods of time can cause the elimination of good bacteria in your system. Ask your doc. for suggestions. When taking antibiotics now, my husband also has to take vancomycin to kill any cediff strains.

Subject: Re: Pain medication??To: Date: Thursday, February 26, 2009, 3:22 PM

Gwynn,I go to pain management as well. I have dilaudid for pain. I have been on the same dose for 2 years. It still seems to work for me although it doesn't always have the same kick it used to and occasionally I have to take two pills instead of one. This was at the suggestion of my pain dr because I didn't want to up the dose.I also have a prescription for phenergrin (sp) for nausea which helps a lot. I think sometimes the nausea is more annoying and frustrating then pain. I didn't realize how much socializing revolves around food until eating became unpleasant.I have to take antibiotics daily to avoid bouts of cholangitis. This may sound weird but I think that three months of antibiotics have helped with the pain and nausea. I think the never-ending infections made both problems worse. Not sure if any of this will help with your daughter. Hope you get some good ideas and that she'll feel better

soon.DarcySent from my Verizon Wireless BlackBerry

February 26, 2009

My husband was on a steady dose of cipro for months to help with infection(s). However, side effects are cediff and becoming resistant to some antibiotics. My husband now often gets MRBE (multiple resistant bacterial ecoli) and has had one good round of cediff. Some of these antibiotics used for long periods of time can cause the elimination of good bacteria in your system. Ask your doc. for suggestions. When taking antibiotics now, my husband also has to take vancomycin to kill any cediff strains.

Subject: Re: Pain medication??To: Date: Thursday, February 26, 2009, 3:22 PM

Gwynn,I go to pain management as well. I have dilaudid for pain. I have been on the same dose for 2 years. It still seems to work for me although it doesn't always have the same kick it used to and occasionally I have to take two pills instead of one. This was at the suggestion of my pain dr because I didn't want to up the dose.I also have a prescription for phenergrin (sp) for nausea which helps a lot. I think sometimes the nausea is more annoying and frustrating then pain. I didn't realize how much socializing revolves around food until eating became unpleasant.I have to take antibiotics daily to avoid bouts of cholangitis. This may sound weird but I think that three months of antibiotics have helped with the pain and nausea. I think the never-ending infections made both problems worse. Not sure if any of this will help with your daughter. Hope you get some good ideas and that she'll feel better

soon.DarcySent from my Verizon Wireless BlackBerry

February 26, 2009

My husband was on a steady dose of cipro for months to help with infection(s). However, side effects are cediff and becoming resistant to some antibiotics. My husband now often gets MRBE (multiple resistant bacterial ecoli) and has had one good round of cediff. Some of these antibiotics used for long periods of time can cause the elimination of good bacteria in your system. Ask your doc. for suggestions. When taking antibiotics now, my husband also has to take vancomycin to kill any cediff strains.

Subject: Re: Pain medication??To: Date: Thursday, February 26, 2009, 3:22 PM

Gwynn,I go to pain management as well. I have dilaudid for pain. I have been on the same dose for 2 years. It still seems to work for me although it doesn't always have the same kick it used to and occasionally I have to take two pills instead of one. This was at the suggestion of my pain dr because I didn't want to up the dose.I also have a prescription for phenergrin (sp) for nausea which helps a lot. I think sometimes the nausea is more annoying and frustrating then pain. I didn't realize how much socializing revolves around food until eating became unpleasant.I have to take antibiotics daily to avoid bouts of cholangitis. This may sound weird but I think that three months of antibiotics have helped with the pain and nausea. I think the never-ending infections made both problems worse. Not sure if any of this will help with your daughter. Hope you get some good ideas and that she'll feel better

soon.DarcySent from my Verizon Wireless BlackBerry

February 26, 2009

Hi Gwynn,

I know how your daughter feels, paracitamol doesnt do a thing for me

now. I take co-codamol in 2 differenc strengths according to how bad

the pain is. 30mg/500mg for the really bad days and 8mg/500mg for the

not so bad. co-codamol is a mixture of codine and paracitamol. I also

have a box of tramadol for extreme cases. Hope this helps and please

excuse my poor spelling!

UK

February 26, 2009

Gwynn,

I don't know what your daughter has tried. I went to a Rheumatologis (because

that's where my Hep sent me) and we did all kinds of different trials on some of

the anti-depressants that ofteh help people in chronic pain. I could not

tolerate any of them. I am on Norco (high dose hydrocodone 10/325) and take 240

a month. I used to take 2 pills every four hours, but it became less and less

effective and I began experiencing withdrawal symptoms between doses. I cut the

dose down to 1 1/2 pills every four hours, but I usally wake up at night in

terrible pain. I am working on reducing it even further because it isn't

effective. What is causing your dau's pain. they said mine was fibromyalgia. But

I think it is something else because I have some other problems. We don't have a

pain treatment center around here, but I'm thinking about finding one in SLC

Utah because that's the closest to us and where I will have my transplant. I

can't live with this pain (I guess I can, but I don't do it

very well.) Hope that helps a little. Cheryl ID

Pain medication??

> I was wondering what type of pain medication people are taking?? My

> daughter has constant pain and often nausea that goes with it, what

> type of pain medication are some of you taking and how well does it

> work?? She feels like her body has gotten used to the pain meds she is

> using and it is not that affective any more. She was thinking if she

> tried something else and alternated between pain meds monthly or so it

> would work better. She is aware that pain meds are not good for you

> but she says she cannot live in constant pain and if she takes the

> pain meds at least she can do some things during the day!!!

>

> Thanks.

> Gwynn

>

February 26, 2009

Hi Gwynne,First, I have to say that the doctors looked and tested for a lot of things, but could not find any physiological reason for my pain except that I have PSC. I first tried over the counter pain med. and they did nothing. Next I tried the antidepressants and they also did not help. Next, I went to narcotics. I tried Percocet and Oxycodone. The first month I was on them I thought they were a wonder drug. They helped my fatigue and made the pain tolerable. I felt somewhat normal. Then they turned on me. The pain got worse, withdrawal symptoms between doses, weakness, and vision problems. It was awful; no free lunch here. I went to the pain clinic at Mayo. The first thing they wanted me to do is go to their 3 week course on pain rehab.. in Rochester. It costs $27,000! I said no thanks and they labeled me a

"noncompliant patient" They told me during the office visit that no one should be on narcotics long term, period. Not all pain clinics adhere to this protocol, but there are some real problems being on them long term (I speak from experience). Even after getting off narcotics, I wake up 5 to 15 times a night in pain. Sometimes I can go back to sleep, other times I just get up. I am in pain all the time. It's this kind of pain that sends up the cancer red flags, but they have not found anything thus far. The only thing that brings any relief is weight lifting. Perhaps the abdominal pressure helps bile flow?I know that all this is not what you or your daughter want to hear, but this is what I have found out the long hard way. Hope this helps. Let me know if you have any questions, but I am not sure I have any answers.Best

Regards,

February 26, 2009

Hi Gwynne,First, I have to say that the doctors looked and tested for a lot of things, but could not find any physiological reason for my pain except that I have PSC. I first tried over the counter pain med. and they did nothing. Next I tried the antidepressants and they also did not help. Next, I went to narcotics. I tried Percocet and Oxycodone. The first month I was on them I thought they were a wonder drug. They helped my fatigue and made the pain tolerable. I felt somewhat normal. Then they turned on me. The pain got worse, withdrawal symptoms between doses, weakness, and vision problems. It was awful; no free lunch here. I went to the pain clinic at Mayo. The first thing they wanted me to do is go to their 3 week course on pain rehab.. in Rochester. It costs $27,000! I said no thanks and they labeled me a

"noncompliant patient" They told me during the office visit that no one should be on narcotics long term, period. Not all pain clinics adhere to this protocol, but there are some real problems being on them long term (I speak from experience). Even after getting off narcotics, I wake up 5 to 15 times a night in pain. Sometimes I can go back to sleep, other times I just get up. I am in pain all the time. It's this kind of pain that sends up the cancer red flags, but they have not found anything thus far. The only thing that brings any relief is weight lifting. Perhaps the abdominal pressure helps bile flow?I know that all this is not what you or your daughter want to hear, but this is what I have found out the long hard way. Hope this helps. Let me know if you have any questions, but I am not sure I have any answers.Best

Regards,

February 26, 2009

-

Your advice to Gwynne is probably correct. However, if you go to a pain management doctor ( not a clinic) who works hand and hand with your gastro specialist and or PSC specialist they can personalize a treatment to fit your specific needs. In our case, we started out almost at end stage PSC when my husband found out. His pain is constant. Even though he will not be a candidate for a liver transplant, every day is still precious and we monitor the drugs he gets that go through his liver.

He is even allowd to have 1 glass of wine at night now, but any drugs that can build up in his liver system we really spread out or alternate. As I read every thing I can on this disease, I find that there are few simularities in progression, pain tolerence, etc. Some drugs that many tolerate, my husband can not. As for many visa versa.

We have learned to trust our gut instinct first. Do what you think is best for you.

Subject: Re: Pain medication??To: Date: Thursday, February 26, 2009, 7:12 PM

Hi Gwynne,First, I have to say that the doctors looked and tested for a lot of things, but could not find any physiological reason for my pain except that I have PSC. I first tried over the counter pain med. and they did nothing. Next I tried the antidepressants and they also did not help. Next, I went to narcotics. I tried Percocet and Oxycodone. The first month I was on them I thought they were a wonder drug. They helped my fatigue and made the pain tolerable. I felt somewhat normal. Then they turned on me. The pain got worse, withdrawal symptoms between doses, weakness, and vision problems. It was awful; no free lunch here. I went to the pain clinic at Mayo. The first thing they wanted me to do is go to their 3 week course on pain rehab.. in Rochester. It costs $27,000! I said no thanks and they labeled me a "noncompliant patient" They told me during the office visit that no one

should be on narcotics long term, period. Not all pain clinics adhere to this protocol, but there are some real problems being on them long term (I speak from experience). Even after getting off narcotics, I wake up 5 to 15 times a night in pain. Sometimes I can go back to sleep, other times I just get up. I am in pain all the time. It's this kind of pain that sends up the cancer red flags, but they have not found anything thus far. The only thing that brings any relief is weight lifting. Perhaps the abdominal pressure helps bile flow?I know that all this is not what you or your daughter want to hear, but this is what I have found out the long hard way. Hope this helps. Let me know if you have any questions, but I am not sure I have any answers.Best Regards,

February 26, 2009

-

Your advice to Gwynne is probably correct. However, if you go to a pain management doctor ( not a clinic) who works hand and hand with your gastro specialist and or PSC specialist they can personalize a treatment to fit your specific needs. In our case, we started out almost at end stage PSC when my husband found out. His pain is constant. Even though he will not be a candidate for a liver transplant, every day is still precious and we monitor the drugs he gets that go through his liver.

He is even allowd to have 1 glass of wine at night now, but any drugs that can build up in his liver system we really spread out or alternate. As I read every thing I can on this disease, I find that there are few simularities in progression, pain tolerence, etc. Some drugs that many tolerate, my husband can not. As for many visa versa.

We have learned to trust our gut instinct first. Do what you think is best for you.

Subject: Re: Pain medication??To: Date: Thursday, February 26, 2009, 7:12 PM

Hi Gwynne,First, I have to say that the doctors looked and tested for a lot of things, but could not find any physiological reason for my pain except that I have PSC. I first tried over the counter pain med. and they did nothing. Next I tried the antidepressants and they also did not help. Next, I went to narcotics. I tried Percocet and Oxycodone. The first month I was on them I thought they were a wonder drug. They helped my fatigue and made the pain tolerable. I felt somewhat normal. Then they turned on me. The pain got worse, withdrawal symptoms between doses, weakness, and vision problems. It was awful; no free lunch here. I went to the pain clinic at Mayo. The first thing they wanted me to do is go to their 3 week course on pain rehab.. in Rochester. It costs $27,000! I said no thanks and they labeled me a "noncompliant patient" They told me during the office visit that no one

should be on narcotics long term, period. Not all pain clinics adhere to this protocol, but there are some real problems being on them long term (I speak from experience). Even after getting off narcotics, I wake up 5 to 15 times a night in pain. Sometimes I can go back to sleep, other times I just get up. I am in pain all the time. It's this kind of pain that sends up the cancer red flags, but they have not found anything thus far. The only thing that brings any relief is weight lifting. Perhaps the abdominal pressure helps bile flow?I know that all this is not what you or your daughter want to hear, but this is what I have found out the long hard way. Hope this helps. Let me know if you have any questions, but I am not sure I have any answers.Best Regards,

February 26, 2009

-

Your advice to Gwynne is probably correct. However, if you go to a pain management doctor ( not a clinic) who works hand and hand with your gastro specialist and or PSC specialist they can personalize a treatment to fit your specific needs. In our case, we started out almost at end stage PSC when my husband found out. His pain is constant. Even though he will not be a candidate for a liver transplant, every day is still precious and we monitor the drugs he gets that go through his liver.

He is even allowd to have 1 glass of wine at night now, but any drugs that can build up in his liver system we really spread out or alternate. As I read every thing I can on this disease, I find that there are few simularities in progression, pain tolerence, etc. Some drugs that many tolerate, my husband can not. As for many visa versa.

We have learned to trust our gut instinct first. Do what you think is best for you.

Subject: Re: Pain medication??To: Date: Thursday, February 26, 2009, 7:12 PM

Hi Gwynne,First, I have to say that the doctors looked and tested for a lot of things, but could not find any physiological reason for my pain except that I have PSC. I first tried over the counter pain med. and they did nothing. Next I tried the antidepressants and they also did not help. Next, I went to narcotics. I tried Percocet and Oxycodone. The first month I was on them I thought they were a wonder drug. They helped my fatigue and made the pain tolerable. I felt somewhat normal. Then they turned on me. The pain got worse, withdrawal symptoms between doses, weakness, and vision problems. It was awful; no free lunch here. I went to the pain clinic at Mayo. The first thing they wanted me to do is go to their 3 week course on pain rehab.. in Rochester. It costs $27,000! I said no thanks and they labeled me a "noncompliant patient" They told me during the office visit that no one

should be on narcotics long term, period. Not all pain clinics adhere to this protocol, but there are some real problems being on them long term (I speak from experience). Even after getting off narcotics, I wake up 5 to 15 times a night in pain. Sometimes I can go back to sleep, other times I just get up. I am in pain all the time. It's this kind of pain that sends up the cancer red flags, but they have not found anything thus far. The only thing that brings any relief is weight lifting. Perhaps the abdominal pressure helps bile flow?I know that all this is not what you or your daughter want to hear, but this is what I have found out the long hard way. Hope this helps. Let me know if you have any questions, but I am not sure I have any answers.Best Regards,

February 26, 2009

I probably should not start on the pain management courses that my GI has referred me to, and instead ask him for a pain management doctor, as you have mentioned. Personally, i do not believe that these courses will help that much. I have been once to a similar but a more generalized course "Living with Chronic Conditions", and i don't think i did get much out of it. I am also referred to acupuncture, and i am going to try it anyway, although i am not putting much hope on that one, too, to help with that kind of pain.

From: Squillace <pssquill (AT) yahoo (DOT) com>Subject: Re: Pain medication??To: @ yahoogroups. comDate: Thursday, February 26, 2009, 7:12 PM

Hi Gwynne,First, I have to say that the doctors looked and tested for a lot of things, but could not find any physiological reason for my pain except that I have PSC. I first tried over the counter pain med. and they did nothing. Next I tried the antidepressants and they also did not help. Next, I went to narcotics. I tried Percocet and Oxycodone. The first month I was on them I thought they were a wonder drug. They helped my fatigue and made the pain tolerable. I felt somewhat normal. Then they turned on me. The pain got worse, withdrawal symptoms between doses, weakness, and vision problems. It was awful; no free lunch here. I went to the pain clinic at Mayo. The first thing they wanted me to do is go to their 3 week course on pain rehab.. in Rochester. It costs $27,000! I said no thanks and they labeled me a "noncompliant patient" They told me during the office visit that no one

should be on narcotics long term, period. Not all pain clinics adhere to this protocol, but there are some real problems being on them long term (I speak from experience). Even after getting off narcotics, I wake up 5 to 15 times a night in pain. Sometimes I can go back to sleep, other times I just get up. I am in pain all the time. It's this kind of pain that sends up the cancer red flags, but they have not found anything thus far. The only thing that brings any relief is weight lifting. Perhaps the abdominal pressure helps bile flow?I know that all this is not what you or your daughter want to hear, but this is what I have found out the long hard way. Hope this helps. Let me know if you have any questions, but I am not sure I have any answers.Best Regards,

February 26, 2009

I probably should not start on the pain management courses that my GI has referred me to, and instead ask him for a pain management doctor, as you have mentioned. Personally, i do not believe that these courses will help that much. I have been once to a similar but a more generalized course "Living with Chronic Conditions", and i don't think i did get much out of it. I am also referred to acupuncture, and i am going to try it anyway, although i am not putting much hope on that one, too, to help with that kind of pain.

From: Squillace <pssquill (AT) yahoo (DOT) com>Subject: Re: Pain medication??To: @ yahoogroups. comDate: Thursday, February 26, 2009, 7:12 PM

Hi Gwynne,First, I have to say that the doctors looked and tested for a lot of things, but could not find any physiological reason for my pain except that I have PSC. I first tried over the counter pain med. and they did nothing. Next I tried the antidepressants and they also did not help. Next, I went to narcotics. I tried Percocet and Oxycodone. The first month I was on them I thought they were a wonder drug. They helped my fatigue and made the pain tolerable. I felt somewhat normal. Then they turned on me. The pain got worse, withdrawal symptoms between doses, weakness, and vision problems. It was awful; no free lunch here. I went to the pain clinic at Mayo. The first thing they wanted me to do is go to their 3 week course on pain rehab.. in Rochester. It costs $27,000! I said no thanks and they labeled me a "noncompliant patient" They told me during the office visit that no one

should be on narcotics long term, period. Not all pain clinics adhere to this protocol, but there are some real problems being on them long term (I speak from experience). Even after getting off narcotics, I wake up 5 to 15 times a night in pain. Sometimes I can go back to sleep, other times I just get up. I am in pain all the time. It's this kind of pain that sends up the cancer red flags, but they have not found anything thus far. The only thing that brings any relief is weight lifting. Perhaps the abdominal pressure helps bile flow?I know that all this is not what you or your daughter want to hear, but this is what I have found out the long hard way. Hope this helps. Let me know if you have any questions, but I am not sure I have any answers.Best Regards,

February 26, 2009

Dear Cheryl,

Thanks so much for the info. I am sorry you are in so much pain. My

daughter has not reached that stage yet but is in constant milder pain

and has nausea often. She is also on hydrocodone 10mg with the

tylonol. She is taking more and more as they lose their affect....like

what happened to you. She is now taking 3-4 tabs a day.up from the 1-2

a day she was taking.

She has vasculitis and some Docs have said she may have vasculitis in

some of her organs,but nothing has ever been verified, most of her

vasculitis has been in her legs. Anyway, we are going to try

acupuncture, and perhaps some other stuff if possible. We will try and

see a pain speciaist??? but maybe the rhuematologist would be a good

idea??

Thanks so much for the info, I really appreciate all the info I can get.

Regards,

Gwynn

>

> Gwynn,

> I don't know what your daughter has tried. I went to a Rheumatologis

(because that's where my Hep sent me) and we did all kinds of

different trials on some of the anti-depressants that ofteh help

people in chronic pain. I could not tolerate any of them. I am on

Norco (high dose hydrocodone 10/325) and take 240 a month. I used to

take 2 pills every four hours, but it became less and less effective

and I began experiencing withdrawal symptoms between doses. I cut the

dose down to 1 1/2 pills every four hours, but I usally wake up at

night in terrible pain. I am working on reducing it even further

because it isn't effective. What is causing your dau's pain. they said

mine was fibromyalgia. But I think it is something else because I have

some other problems. We don't have a pain treatment center around

here, but I'm thinking about finding one in SLC Utah because that's

the closest to us and where I will have my transplant. I can't live

with this pain (I guess I can, but I don't do it

> very well.) Hope that helps a little. Cheryl ID

> Pain medication??

>

> > I was wondering what type of pain medication people are taking?? My

> > daughter has constant pain and often nausea that goes with it, what

> > type of pain medication are some of you taking and how well does it

> > work?? She feels like her body has gotten used to the pain meds she is

> > using and it is not that affective any more. She was thinking if she

> > tried something else and alternated between pain meds monthly or so it

> > would work better. She is aware that pain meds are not good for you

> > but she says she cannot live in constant pain and if she takes the

> > pain meds at least she can do some things during the day!!!

> >

> > Thanks.

> > Gwynn

> >

>

February 26, 2009