6MP and PSC/AIH

[Guest guest]

Is there anyone out there that has had these as a side effects and their doctors

believe it is related to 6MP? What did your physician recommend? Muscle

wasting and neuropathy in hands and feet & legs. Can anyone provide me with a

link to research information on this? Most of the information on 6MP on the PSC

website is geared towards IBS treatment.

[Guest guest]

I haven't heard of anyone being on 6MP for PSC/AIH. I'm on ursodiol, imuran and prednisone for the PSC & AIH. I'm also on Cipro for chronic pouchitis.Marie

To: From: jonesmj@...Date: Thu, 26 Mar 2009 14:30:15 +0000Subject: 6MP and PSC/AIH

Is there anyone out there that has had these as a side effects and their doctors believe it is related to 6MP? What did your physician recommend? Muscle wasting and neuropathy in hands and feet & legs. Can anyone provide me with a link to research information on this? Most of the information on 6MP on the PSC website is geared towards IBS treatment.

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[Guest guest]

Thanks for the information it helps and I am going to read the research.

He is on 6MP & Pred for the AIH. Urso for PSC. He was off the Pred for 2 1/2

yrs but had a flare last April. He had intense joint pain from Imuran. Their

goal is to find out what is causing the neuropathy and stop it or slow it's

progress. He's becoming very frail very quickly and we need to figure out why.

Any other direction anyone can point me to research would be great.

[Guest guest]

Thanks for the information it helps and I am going to read the research.

He is on 6MP & Pred for the AIH. Urso for PSC. He was off the Pred for 2 1/2

yrs but had a flare last April. He had intense joint pain from Imuran. Their

goal is to find out what is causing the neuropathy and stop it or slow it's

progress. He's becoming very frail very quickly and we need to figure out why.

Any other direction anyone can point me to research would be great.

[Guest guest]

Thanks for the information it helps and I am going to read the research.

He is on 6MP & Pred for the AIH. Urso for PSC. He was off the Pred for 2 1/2

yrs but had a flare last April. He had intense joint pain from Imuran. Their

goal is to find out what is causing the neuropathy and stop it or slow it's

progress. He's becoming very frail very quickly and we need to figure out why.

Any other direction anyone can point me to research would be great.

[Guest guest]

Re: 6MP and PSC/AIH

Posted by: " " rhodesdavid1@... rhodesdavidwl

Fri Mar 27, 2009 7:57 am (PDT)

Hi ;A paper on thiopurines (including 6-mercaptopurine and azathioprine (Imuran)) and their toxicity profiles came out today:

Hi there,

I've just been alerted to this discussion by Penny W.

As the "old timers" here will know I've had UC for 52 years (I'm 59). I've undergone every treatment available over the years, including a colostomy and eventually developed a toxic megacolon resulting in ileostomy in 1986. I later underwent an ileorectal anastomosis. Despite all clues my hepatologist(s) refuse to diagnose PSC..... probably I have small duct type. This is the VERY short version.....LOL

I have responded badly to all UC meds (and URSO) and have never been in clinical remission for the UC UNTIL I was given 6-MP 2+ years ago. For that reason alone I am prepared to put up with "my" side effect of unpleasant headaches permanently. I have had one immunosuppression crisis on the 6-MP when my leucocytes and Hb dropped precipitously and was forced to stop the 6-MP. I was then put on Imuran and had to give that up within 12 days. I had been given the 6-MP in preference to Imuran in the first place because it is a metabolite of Imuran and the argument was that a shorter chemical chain might give me less chance of severe side effects. Certainly seems to have been the case.

I do now have a "punishment" for this remission in that the anastomosis has now healed and become scar tissue and has narrowed down to 4mm... with resulting severe obstructive symptoms. I am to return next week to my "alma mater" hospital in the UK, St. Mark's Hospital (a hospital dealing ONLY with colorectal diseases http://www.stmarkshospital.org.uk/) for an attempt at balloon dilatation of the stricture. Hopefully the Paneth cell metaplastic tumour they found in my rectum in October will not have "morphed" into something else!!

I think the only advice I can give is that if you are given the advice/suggestion to try 6-MP don't reject it out of hand. I have been really glad of 2 years remission in all those 57 years and the regular blood tests for the leucocytes etc are no issue at all.

I was also told it would take 3 months to show any effect but I had a dramatic reduction in my UC symptoms within a couple of weeks and endsocopic signs of remission withinn 8 weeks. We're all different.

Hope that helps.

DutchPat

PS. I'm now on a waiting list for mesenchymal stem cell therapy as soon as it is approved for trial in UC... it's already being trialled for Crohn's I've been told. That might be my best hope of all.

[Guest guest]

Re: 6MP and PSC/AIH

Posted by: " " rhodesdavid1@... rhodesdavidwl

Fri Mar 27, 2009 7:57 am (PDT)

Hi ;A paper on thiopurines (including 6-mercaptopurine and azathioprine (Imuran)) and their toxicity profiles came out today:

Hi there,

I've just been alerted to this discussion by Penny W.

As the "old timers" here will know I've had UC for 52 years (I'm 59). I've undergone every treatment available over the years, including a colostomy and eventually developed a toxic megacolon resulting in ileostomy in 1986. I later underwent an ileorectal anastomosis. Despite all clues my hepatologist(s) refuse to diagnose PSC..... probably I have small duct type. This is the VERY short version.....LOL

I have responded badly to all UC meds (and URSO) and have never been in clinical remission for the UC UNTIL I was given 6-MP 2+ years ago. For that reason alone I am prepared to put up with "my" side effect of unpleasant headaches permanently. I have had one immunosuppression crisis on the 6-MP when my leucocytes and Hb dropped precipitously and was forced to stop the 6-MP. I was then put on Imuran and had to give that up within 12 days. I had been given the 6-MP in preference to Imuran in the first place because it is a metabolite of Imuran and the argument was that a shorter chemical chain might give me less chance of severe side effects. Certainly seems to have been the case.

I do now have a "punishment" for this remission in that the anastomosis has now healed and become scar tissue and has narrowed down to 4mm... with resulting severe obstructive symptoms. I am to return next week to my "alma mater" hospital in the UK, St. Mark's Hospital (a hospital dealing ONLY with colorectal diseases http://www.stmarkshospital.org.uk/) for an attempt at balloon dilatation of the stricture. Hopefully the Paneth cell metaplastic tumour they found in my rectum in October will not have "morphed" into something else!!

I think the only advice I can give is that if you are given the advice/suggestion to try 6-MP don't reject it out of hand. I have been really glad of 2 years remission in all those 57 years and the regular blood tests for the leucocytes etc are no issue at all.

I was also told it would take 3 months to show any effect but I had a dramatic reduction in my UC symptoms within a couple of weeks and endsocopic signs of remission withinn 8 weeks. We're all different.

Hope that helps.

DutchPat

PS. I'm now on a waiting list for mesenchymal stem cell therapy as soon as it is approved for trial in UC... it's already being trialled for Crohn's I've been told. That might be my best hope of all.