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Author Topic: Ulcerative Colitis & HIV and use of immunosuppresants  (Read 1566 times)

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Offline Delby

  • Member
  • Posts: 103
Ulcerative Colitis & HIV and use of immunosuppresants
« on: August 20, 2012, 09:15:34 AM »
I'm struggling guys & gals. Unfortunately I suffer from both ulcerative colitis and HIV. The UC is my main issue. Without it, my life would be great and I would be feeling healthy. I am washed out and exhausted from having constant D for 5 yrs (not 1 day off!). Lost a lot of weight too. How ironic hey that it's the UC causing me issues?

As if one disease wasn't enough to contend with! Anyway, i'm not one to sulk, but i need help. My doc want's to put me Imuran (azathioprine) which is an immunosuppresant. However, both my ID dr and gastroenterologist both say it is safe to take and won't effect my cd4% or cd4. It effects another part of your immune system (lymphocytes).

However, i'm sceptical and want advice. Anyone out there that's used immuno's like the one above?

Delby

 :-\

Offline newt

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  • the one and original newt
Re: Ulcerative Colitis & HIV and use of immunosuppresants
« Reply #1 on: August 20, 2012, 03:23:44 PM »
This is a rock and a hard place question.

Azathioprine is mainly used at relatively high doses to start, then a lower maintenance dose according to body weight, so hopefully you will be on a lowish dose long term and the possible squits this med can have as a side effect won't be a general feature of life.... << I mean, that is part of the point of taking it eh? ... and the colits will resolve.

Azathioprine shouldn't affect your CD4s significantly (in most cases), but will depress them a bit, as it will slightly-seriously suppress some parts of your other white blood cells (hard to tell before you take it, past experience favours slightly end of range), and perhaps affect red blood cells (check for anemia regular like) and perhaps affect platelets (again check regular). Thiopurine S-methyl transferase (TPMT) genetics affects the risk of this happening, and this can be tested for. It is generally a well tolerated drug though and serious white blood cell suppression is uncommon. It takes up to 8 weeks to take effect. It is probably kinder long term than eg corticosteroids.

Also, there is a noted increase in the risk of skin cancer (hence the use sunblock/stay out the sun) and lymphoma so this needs to be discussed before taking this med.

Active CMV can mimic colitis, so this should be checked for. Eliminating active CMV if it is present (not nice treatment but short term) might help resolve the problem.

Hope this helps

- matt
« Last Edit: August 20, 2012, 03:47:26 PM by newt »
"The object is to be a well patient, not a good patient"

Offline LM

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  • Posts: 409
Re: Ulcerative Colitis & HIV and use of immunosuppresants
« Reply #2 on: August 20, 2012, 04:34:50 PM »
I was recently diagnosed as well with UC, but so far my situation is not as dire as yours. I don't really have diarrhea, but a lot of mucus discharge and inflammation in the rectum. It's literally a pain in the ass.

So far, doc put me on Mesalazine, which supposedly is not immunosuppressant. It has helped a bit, but it's very slow and anything makes it worse, reversing any improvements from before.

Is it any good?

Newt, do you know anything about it?

Offline surf18

  • Member
  • Posts: 525
Re: Ulcerative Colitis & HIV and use of immunosuppresants
« Reply #3 on: August 20, 2012, 09:04:08 PM »
I feel for you guys. I had some gut issues this winter and they did a colonoscopy and endo on me. After the procedure the dr told me I had UC. And gave me a prescription for two drugs. I did research on them and was like WTF? Why are they giving me a immune suppressing drugs when I want a good immune system? The more I read the more I freaked. I never took the drugs and figured Id live with the issue until I called to scd my follow up appt, at that time the biopsy results would be in and we could disucss the HIV an these new drugs. By the grace of god it turned out not to be UC. They said it appears I had a gut infection that has resolved it self and the inflammation on the colon they saw is the infection resolving.

Offline Delby

  • Member
  • Posts: 103
Re: Ulcerative Colitis & HIV and use of immunosuppresants
« Reply #4 on: August 21, 2012, 09:29:46 AM »
This is a rock and a hard place question.

Azathioprine is mainly used at relatively high doses to start, then a lower maintenance dose according to body weight, so hopefully you will be on a lowish dose long term and the possible squits this med can have as a side effect won't be a general feature of life.... << I mean, that is part of the point of taking it eh? ... and the colits will resolve.

Azathioprine shouldn't affect your CD4s significantly (in most cases), but will depress them a bit, as it will slightly-seriously suppress some parts of your other white blood cells (hard to tell before you take it, past experience favours slightly end of range), and perhaps affect red blood cells (check for anemia regular like) and perhaps affect platelets (again check regular). Thiopurine S-methyl transferase (TPMT) genetics affects the risk of this happening, and this can be tested for. It is generally a well tolerated drug though and serious white blood cell suppression is uncommon. It takes up to 8 weeks to take effect. It is probably kinder long term than eg corticosteroids.

Also, there is a noted increase in the risk of skin cancer (hence the use sunblock/stay out the sun) and lymphoma so this needs to be discussed before taking this med.

Active CMV can mimic colitis, so this should be checked for. Eliminating active CMV if it is present (not nice treatment but short term) might help resolve the problem.

Hope this helps

- matt


Thanks Matt for coming back and being so informative. I'm in the UK BTW.

Ok so they tested me for CMV colitis by way of several 'oscopies' and it turns out to be UC. My symptoms are the big D which on good days is about 4/day and bad days 8-12/day. I only bleed when i'm in a flare and also have lots of issues with extreme pain (during flare) and a lot of gas etc.

My UC came about 12 months after my HIV diagnosis. I think around the time i started ART.  Re the TPMT test your spot on. I'm going for that in the next week or so. I am under professor Gazzard in London who is both a top HIV dr and gastro and he seems to think i'll be fine. Yet i cannot believe taking an immunosuppressant will not effect my CD4s. How can that be possible? Also, this is a long term med so minimum time spent on it will probably be about 2 yrs. I just don't know. As you say i'm stuck between a rock and a hard place. I want to believe him, but feel he's being a tad flippant about it. What do you think i should do?

Delby

Offline newt

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  • Posts: 3,868
  • the one and original newt
Re: Ulcerative Colitis & HIV and use of immunosuppresants
« Reply #5 on: August 21, 2012, 03:06:35 PM »
Gazzard's a real good HIV doc and a good gut doc too. If you don't get on with the treatment you can stop and won't be worse off than before.

Not being tied to the bog will prob make you happier and able to get out and about more, do some sustained gentle exercise, which is generally regarded as beneficial for UC. And who knows, in 2 years maybe there will be an option to stop the immunosuppressant and see if the UC has resolved.

Set against this are the possible side effects from the new med.

Only you can decide what you want to do.

- matt
"The object is to be a well patient, not a good patient"

 


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