Being Told to go on Imuran after surgrey

[Msb]

Apologize for length- 57 yr old male. Diagnosed w Crohns for 20yrs (1999). Otherwise great health and live a very active lifestyle. Prescribed Pentasa, been on ever since. Only symptom for 16 yrs was uncomfortable cramping 12 hr period maybe 2 or 3 times a year. Very manageable. In 2016 the cramping generally went away but started having lots of gastric noise and fatigue often with a slow period weight loss. GI recommended CT as not had any test since 1999. Test revealed had developed a fistula above crohns area in small intestine. Got second opinion from major university specialist. Was told should have surgery and then go on a biologic. As I felt generally good I freaked out over this. Decided I not doing any of this until I felt bad enough to go w surgery then hardcore drug. Again all manageable last 4 yrs. First of March last month developed a strange sharp pain in lower right of abdomen. Went in another Ct. Found I had abscess. General Physician put me in hospital that day. Several days in to drain then on antibiotics for several weeks. General, GI and Surgeon recommended surgery. Went in they removed 12 inches of bad area. Healed very fast last in few weeks and feeling fantastic now. No symptoms and eating like crazy. Last week GI I recommended remicade/Humira. I had same concerns about biologic and worried about Covid 19 effects while on drug (my job requires face to face with people). GI reversed and suggested Imuran would be better as I doing well so far and Imuran not as immune altering along w easy to take. Was excited after hearing this but surfing the net it appears side effects just as bad as Remicade or Humira. I have just as much fear based on what I am reading. I feel great but dont want to stick my head in the sand and ignore potential issues. Greatly appreciate any thoughts or recommendations. Thanks so much!

 

[Msb]

Imuran—Waiting on results of blood test to see if I can taKe this drug. Really stressing over taking these Type drugs. Pursuant to above post I feel great after surgery With no Crohns symptoms and find it hard to think I may be taking something that has potential to make me feel bad. Would I be trading potential to help future Crohns issues for potential of negative biologic side effects. Can anyone tell me if Imuran generally has less side effects and or potential for other problems than Remicade/Humira? My Doctor said it had less potential (certainly easier to take) but reading online seems like everyone is experiencIng bad or unpleasant side effects.

 

[my little penguin]

Imuran is an immunosuppressants
Remicade and humira are biologics
Imuran is linked to higher rates of lymphoma so most pediatric Gi will not use it unless necessary
They use methotrexate instead in Kids
But methotrexate has more liver issues in adults (not in kids )
Biologics have their own risks for potential Side effects
For ds biologics have Presented less side effects over the past almost decade now than the immunosuppressants he has taken

6-mp (sister drug you Imuran ) made his liver enzymes go up
Methotrexate which he takes makes him feel ill the day after he takes it

biologics in comparison no issues for him so far -

good luck everyone is different
What works for one may not work for another

 

[hawkeye]

I was on Imuran for almost 25 years, varying dosages with no issues.

 

[Msb]

Thanks hawkeye as searching online do not see a lot of people posting positive about particular meds. Naturally the negative issues tend to lead conversations. Still not taken the Imuran prescribed as I been feeling great overall since surgery in March for abscess and removing section of bad small intestine. Eating what I like, gaining some weight and bulking up muscle as I desperately wanted. Now I am getting the pounds/muscle back I need to start eating more for health as opposed to weight. Have developed a thrush like symptom on my tongue (white/yellowish discoloration). Was told this could come from taking antibiotics and/or symptom of folks with intestinal distress. General doc has me on medicated mouth rinse. Not cleared yet over two weeks. Don't know if any have had this. Want to clear this first before jumping on the Imuran That I am a month and half behind taking. Another excuse for me...

 

[hawkeye]

Never had the thrush. I do recall that as a side effect of some medications..

 

[eleanor_rigby]

I had Crohn’s unknowingly for about 5 years before it caused a perforation, therefore since my diagnosis I have always known I was going to have to risk drug side-effects than risk this disease. I’ve been on imuran now for 5 years, and it’s been 10 years since my surgery so it’s clearly made a massive difference to being on zero treatment. I wouldn’t say I’m always symptom-free, I definitely have the odd bad week. But it’s nothing like when I wasn’t on treatment. I only take 50mg of imuran and nothing else. This is a super low dose, perhaps it’s an option for you? I don’t have any side-effects except come winter I struggle with colds (catching them and clearing them). Thankfully covid lockdowns have meant I didn’t get one this year.
If I were you I would consider maybe another 5-asa drug like Pentasa or a low-dose of imuran. With both I would recommend you have regular testing so that you can rectify any issues earlier, before needing emergency surgery. It may have been possible if you treated your fistula with a biologic in the first instance then you could have avoided surgery. Avoiding surgery is my number one goal!

 

[Poppysocks]

Apologize for length- 57 yr old male. Diagnosed w Crohns for 20yrs (1999). Otherwise great health and live a very active lifestyle. Prescribed Pentasa, been on ever since. Only symptom for 16 yrs was uncomfortable cramping 12 hr period maybe 2 or 3 times a year. Very manageable. In 2016 the cramping generally went away but started having lots of gastric noise and fatigue often with a slow period weight loss. GI recommended CT as not had any test since 1999. Test revealed had developed a fistula above crohns area in small intestine. Got second opinion from major university specialist. Was told should have surgery and then go on a biologic. As I felt generally good I freaked out over this. Decided I not doing any of this until I felt bad enough to go w surgery then hardcore drug. Again all manageable last 4 yrs. First of March last month developed a strange sharp pain in lower right of abdomen. Went in another Ct. Found I had abscess. General Physician put me in hospital that day. Several days in to drain then on antibiotics for several weeks. General, GI and Surgeon recommended surgery. Went in they removed 12 inches of bad area. Healed very fast last in few weeks and feeling fantastic now. No symptoms and eating like crazy. Last week GI I recommended remicade/Humira. I had same concerns about biologic and worried about Covid 19 effects while on drug (my job requires face to face with people). GI reversed and suggested Imuran would be better as I doing well so far and Imuran not as immune altering along w easy to take. Was excited after hearing this but surfing the net it appears side effects just as bad as Remicade or Humira. I have just as much fear based on what I am reading. I feel great but dont want to stick my head in the sand and ignore potential issues. Greatly appreciate any thoughts or recommendations. Thanks so much!

I've refused Imuran since I was a child. I'd much rather be on only remicade or only humira. In fact I was on remicade for 20 years and still refused to go on Imuran as tje remicade lost its potency.

I get warts all over my hands and body that I cannot ever get rid of when I'm on Imuran. Derms burn them off and they always come back. Plus I was always sick with a cold when I was on it. Remicade never did anything like that too me.