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Author Topic: Use of immunosuppresants in HIV and Ulcerative Colitis Patients  (Read 3771 times)

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Offline Delby

  • Member
  • Posts: 114
Hi All,

Sorry i've not been visiting for a while but i've been suffering very badly from my ulcerative colitis. I've had a rough 8 months with 3 admissions and stays in hospital. Basically my GI doc wants me to begin Imuran, an immunosuppressent, used to treat ulcerative colitis.

However, i am extremely reluctant to go on this drug due to the fact that its an immunosuppressant and can inhibit CD4 proliferation.

I dont know what to do . I suffer from diarrhea, bloody stools, abdominal pain, every day and thats how its been for the past 3 yrs with not a days break!!! unfortunately if i dont take the immunosuppressants then i will have to go for surgery which will result in the removal of my whole colon and living with a colostomy bag attached to my abdomen for the rest of my days.

Please has anyone had experience of using immunosuppressants whilst being HIV+?

D



Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Use of immunosuppresants in HIV and Ulcerative Colitis Patients
« Reply #1 on: July 23, 2009, 10:17:27 AM »
I know how your suffering my wife has had uc for seven years(not hiv pos) 5 times in hospital last 3 for a month a time she has a flare up at the moment. she has been on immune suppresants for 18 months and just had shingles. She is undergoing tests now for the last line of treatment available apart from removing colon which is some sort of powerful injections that also can make your immune system very weak.She cant keep taking the massive doses of steriods they keep giving her thats why she will try this other treatment.
Having read on the uc forums about people who have had there colon removed most seem alot happier than before you dont have to have a bag forever as they can connect your small intestine to your anus some have this op and some prefer to stick with the bag.
There is another treatment that they use alot in japan but they do it here in spain so i imagine they have it in the u.s.a. which involves being linked up to a machine that all your blood goes through for some sort of cleansing (sorry i dont know the exact details) maybe you could try that. Good luck.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline minismom

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  • Posts: 2,605
  • Quocumque jeceris stabit
Re: Use of immunosuppresants in HIV and Ulcerative Colitis Patients
« Reply #2 on: July 23, 2009, 04:33:27 PM »
I don't know about the immune suppresants, but I certainly understand about the ulcerative colitis.  I suffered with UC when I was 18.  It turned into toxic colitis and within a month of diagnosis, I went under the knife for a full colonectomy and ileostomy.  I was on massive amounts of Prednisone and untold amounts of IV meds through my subclavian metaport. 

I'm sorry you are going through this.  I remember the pain and fear very well.  You are certainly in my prayers and thoughts for increased health, strength, and recovery.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

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  • Member
  • Posts: 9,912
Re: Use of immunosuppresants in HIV and Ulcerative Colitis Patients
« Reply #3 on: July 23, 2009, 06:47:57 PM »
Delby, sorry, I don't have experience with this.  I just wanted you to know I'm thinking about you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Delby

  • Member
  • Posts: 114
Re: Use of immunosuppresants in HIV and Ulcerative Colitis Patients
« Reply #4 on: July 24, 2009, 04:04:48 AM »
Thank you all for your responses!

I'm so frustrated and tired of the whole thing. Ironically Ulcerative Colitis is giving me much more trouble on a day to day basis than my HIV. Although one could argue i only got UC as a result of my HIV diagnosis. The difficulty is trying to balance the two diseases. If i didnt have HIV, i'd jump at the opportunity to take the immunosuppressents as my quality of life is shit at the moment.

Although my ID Dr says my HIV is under control, for now, and that i should begin the immuno's, i am very reluctant to do so. At the end of the day its me that has to take them, not him, and i dont think he truly would admit to the devastating effect it could have on my immune system.  For a normal healthy individual these drugs are very serious.

What to do, what to do!!! Looks like major surgery is on the horizon. F...ked off with the whole thing!!

Delby

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Use of immunosuppresants in HIV and Ulcerative Colitis Patients
« Reply #5 on: July 25, 2009, 02:40:21 PM »
Delby give it a try you can always come of them if you want my wife had two clear years on them and only flared up as she had to come off them for the shingles meds ,which was caused by me giving her stress over my hiv diagnosis.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Use of immunosuppresants in HIV and Ulcerative Colitis Patients
« Reply #6 on: September 11, 2009, 03:20:26 PM »
Delby my wife is hiv neg but suffers uc 7 years now ,she was really bad 2 years ago 3 admissions in 18 months then they put her on immune suppressants and no trouble for two years now.You will be controled with blood tests so i would try them they will improve your quality of life as i saw how my wife suffered .Diet is very important with uc eat lots of natural yogurt for starters good luck.
« Last Edit: September 11, 2009, 03:22:52 PM by tommy246 »
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Delby

  • Member
  • Posts: 114
Re: Use of immunosuppresants in HIV and Ulcerative Colitis Patients
« Reply #7 on: September 14, 2009, 04:07:51 AM »
Tommy, i had a consultation with my GI last week and he really wants me to start the immunosuppressants. I have been putting them off for over 6 months now, and was tyring to just by myself time. I'm still on steriods and have been on them for about 12 months out of the last 15 months which is well beyond the recommended time frame. The Dr is now worried about the effect the steriods are going to have on my bones etc so he has ordered a bone density scan.

However, if i dont bite the bullet and take the immuno's then  its major surgery for me, which is obviously something i dont want. I'm not going to lie, having HIV and taking immunosuppressants for a min of 2 yrs scares the living hell out of me and i cant quite get my had round it. If i was Neg, then i wouldnt bat an eye lid and i'd go for them. The Dr seems to think that although the immuno's do effect the lymphocyte counts, they leave CD4's relatively intact. I cant see a way round this really, so as my UC is not getting any better and i'm completely fed up and tired of having diarrhea every day then i guess immuno's are my last option.

 


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