Questions Regarding Imuran - Should I Take That Next Step?

I have questions regarding Imuran, but first wanted to provide my background with UC: I'm a 47 year old male who was diagnosed with UC  - left sided disease only - a little over three months ago.  Since diagnosis, I've been taking 4.8g. of Lialda once daily first thing in the morning.  I also have started taking 1,200 mg. of fish oil three times a day with meals, as I've read it has good anti-inflammatory properties.  I've never achieved remission, but during the first month of taking Lialda, my trips to the restroom were reduced from about 30 per day to about 10, with the urgency to go remaining about the same the entire time.  Then, after that initial month, I got REALLY sick with a bad upper respiratory infection, at which point my UC symptoms came back worse than ever despite me being on the Lialda. At that point, my dr. added a 10 week prednisone course starting at 50 mg. daily followed by a reduction in dose by 5mg. at weekly intervals.  The prednisone was like magic; I would say I got all the way into remission with the one important exception that when I did have to go to the restroom, maybe 2-3 times per day at that point, I still had profound urgency and would have maybe two minutes to find a restroom.  For that reason, my dr. added Rowasa enemas for me to administer once daily upon arriving home from work, and Canasa suppositories to be administered once daily at bedtime.  He said the Canasa should help with the inflammation at the very end of the colon and the Rowasa should work a little higher up, the hope being that it would calm my inflammation and cut down on the urgency I experience. I've been on the Canasa and Rowasa a little over a week now.  Can't see much improvement yet, especially since the Rowasa is difficult to keep in any length of time, and the Canasa seem to be expelled virtually unchanged when I have a b.m. a few hours after taking it.  Not to mention that in the meantime, I've been off the prednisone for 3 weeks now, and my symptoms have returned somewhat to the point that I have to go to the restroom probably about 8 or so times per day, including waking up to go once or twice during the night. A final symptom of my disease is that I get sores spontaneously appearing on my upper arms - mostly my right arm - and they take forever to heal.  Interestingly, I'd gotten them on and off throughout my adult life even before my UC symptoms kicked in, but they are much more prevalent since the UC.  I'd been to dermatologists who'd tell me that it was folliculitis, but I knew it wasn't.  Finally, when researching UC on Wikipedia recently, I saw a picture of a patient with erythema nodosum, and the picture looked EXACTLY like what I have. I researched erythema nodosum further and found that the lesions are a consequence of inflammation of the fat cells just below the skin.  Not surprisingly, while I was on the prednisone, they went away completely since the steroids obviously work on inflammation throughout the body.  Of course, now they're back again.  T he sores really hurt, and they’re embarrassing.   Not only do they take forever to heal, but they leave scars when they finally do. So, with all this as background, I wonder what I'm really accomplishing with my current course of treatment.  It seems to me like all the mesalamine products I'm using are only trying to treat my SYMPTOMS of inflammation of the colon as opposed to the root cause - the fact that my immune system is attacking by colon and causing the inflammation.  Not to mention the fact that because these meds are only working locally in the colon, they're not going to do squat when it comes to getting my erythema to go away again. My. dr. told me on my last visit that if I'm not achieving satisfactory results with my three med mesalamine regimen, the next thing to try when I go back to him in six weeks would be Imuran.  It sounds great to me, since it's supposed to treat the ROOT CAUSE of UC by preventing my immune system from attacking my colon.  I think I'm okay with the lymphoma risk from Imuran - the dr. said there is a 4 fold increase of lymphoma in people taking Imuran,but he also said that the baseline risk of developing lymphoma is only 2 in 10,000, so a fourfold risk would still only be 8 in 10,000. The side effect that is more troubling to me is fatigue - but the dr. says it varies widely from person to person.  He said some patients experience almost no fatigue, while others are incredibly tired all the time.  I'd love to get feedback from those of you on the forum regarding both your perception of the efficacy of Imuran, as well as your opinion of the severity of the side effects.  That will really help me decide if pursuing the Imuran option is right for me all things considered.

I was on Imuran for several years, and I did feel much better on it .... it was the closest I've come to remission in 10 years with UC, and never had serious fatigue with it. But - there are more side effects than just the risk of lymphoma. It seriously suppresses your immune system, and that can lead to some unpleasant things. Make sure you get both a flu and pneumonia shot if you go on Imuran, and definitely follow best practices for avoiding contact with germs. I had meningitis while on Imuran because I came into contact with a bad virus that my body couldn't fight. I also eventually developed pancreatitis, another nasty potential side effect. Having said that, I wish I could still safely take Imuran - the risks were worth the reward for me, as I felt substantially better. Unfortunately, I have not been able to acheive the same result with any other medication. Oh, and I even took it while pregnant, and my baby was healthy as a horse :)

I have UC and get skin symptoms as well. Usually at the first signs of an exacerbation of symptoms I will get mild erythema nodosum and pyoderma gangrenosum on my legs, and a drying and cracking of the skin on and around the knuckles of my right hand. Everything generally clears up once in remission or on prednisone.

I have been on 6-MP for about 4 weeks. It hasn't kicked in yet as I just had a bad reoccurrence of symptoms last week. Prior to that, the only side effect I noticed is that I had less deep sleep, but then again I am on prednisone as well so it is not clear that it was the 6-mp.

All the best

I'm not going to comment on the Imuran but I do have few thoughts. Are you sure that the fish oil is doing anything? Even though it can be a very good anti-inflammatory that doesn't necessarily mean it will for you. I tried it and found that it did absolutely nothing for me. You may want to try other anti-inflammatory supplements if you have no evidence the fish oil is working, or you may want to just add another one or two, such as Boswellia or Curcumin - but there are many others. Many people with UC only have a problem in their colons but obviously yours is more systemic. This may mean that dietary changes may be more apt to work in you than someone like me who does not have systemic inflammation. You may have a Candida problem and dealing with that may help both conditions. Anti-inflammatory diets may also be of help to you. If it were me I would try those for those six weeks before your appointment.

It's not

Brian G. said...
one of the responders noted they take 40 mg. prednisone daily as one of their Rx meds. Just curious how long you've been on the prednisone and how much longer your dr. intends to keep you on it?

I've been on prednisone @ 40mg since January 8th, 2013. My taper starts February 26th, and I am told to decrease by 5mg every 7 days. My GI plans to have me down to 20mg by the time I see him next for a flexible-endoscopy to check on my healing progress before weaning me off of pred the rest of the way. The 6mp is still kicking in (I'm at 4 weeks and he told me it would take at least 6 weeks to have full effect). So hopefully I am well healed by the next scope. I wish Pred was a godsend for me as you said it was for you. It has resulted in very slow healing for me, but it stopped the bleeding and dropped me from 15-20 bms a day to 4-5, so I am grateful. I did have a lot of inflammation extending 50cm+ up the pipe (flexible endoscope result before I was given the pred), so it was certainly a bloody mess up there.

Pred is terrible though, it has given me insomnia, low bloodpressure, and other things. So I am very eager to get off of it. I don't want any of the other nasty side effects it gives long-termers, like osteoporosis so I'm guzzling milk for the extra calcium and counting the days until I am off it entirely.

I've worked my way up to 125mg of Imuran with the eventual goal being 150mg

I can't say I've had any side effects, had a couple days where I was fatigued but frankly that's probably just from UC and everything weighing down on me. I'm still on pred now too, low dose just to keep me functioning until we work up to the max Imuran dosage.

My main issue is the joint pain from UC, stomach wise when I'm flaring it's like ~6 trips a day and urgency on most of them. While to a normal person that's a lot, it seems like I'm well on the low end compared to others with UC. Hoping the Imuran cures the joint stuff, because it's awful when it happens.