Lower Imuran dose or deal with 24/7 fatigue?

I recently told my doctor that Imuran was working pretty well on my UC symptoms - far better than anything else I've tried - but my fatigue seems to be getting continuously worse. She told me I could lower the dose of Imuran if I want, but I'm concerned it will cause a flare. My blood work looks okay, and she added B12 injections and prescription iron to deal with slight anemia a few months ago. The B12 and iron haven't helped with the fatigue. I'm already on only 75 mg of Imuran, which is lower than the lowest recommended dose for my weight (100 mg), so this would be a drop to 50 mg. I also take 75 mg of Wellbutrin, which is a stimulant as well as an anti depressant. Although the normal lowest dose of Wellbutrin is 150 mg, I can't seem to get up to that because it causes headaches, and of course, I can't take NSAIDs and tylenol doesn't even touch them.

After nearly 4 years of flaring every time I stopped taking prednisone, I'm terrified of another flare. But I'm also sleeping 10 hours a night, waking up exhausted, and feeling weak and out of it all day long. The fatigue is a less humiliating and painful symptom, but I still can't really do anything besides leave work, get home, and go straight to bed. I wouldn't describe my quality of life as good. I've tried vitamins, supplements, a stimulant anti depressant, and I'm on very low doses of everything already. So do I go lower and risk a flare, or do I just accept the fatigue?

DMC2011 said...
I had that for a few months, its gotten better. I am 55 and I too go home put on my jammies! I love it. The nights I am not in step class I am cozy!

As a matter of fact my really healthy girlfriends all do the same thing! I thought it was because i am sick but nope!

Try putting your head down for quick nap at work! It helped!!

Yeah, but I've been on it for six months, I'm 33, and I would never have the option of going to step class because I'm too tired. I've explained it to people by saying that I only have enough energy to do one thing per day. If it's a work day, work is that one thing. That means cereal or a sandwich for dinner because I'm too tired to cook, and asleep by 7. I grocery shop on Saturday and clean on Sunday and that's it. Those are my one things each of those days.
That's definitely not normal, and I'm actually more tired than when I was malnourished and vitamin deficient from UC. But is stopping worth the risk of running to the bathroom 20-30 times a day? I don't know.

Hi L Rachel,
Im very sorry to hear you are feeling fatique. It might be from the disease even if you think you are in remission and dont have any other symptoms - tiredness and fatique are a symptom.
I have an issue similiar as yours - extreme tiredness for 3-4 months. At the time I was on Salofalk (Mesalazine), and I went to see a new gastro (as my regular one was in Barcelona on holiday) in December as I was losing my mind and wanted to stop feeling that way!
In the next weeks we lowered the dosage I was on. Of course I flared, and it turned out the disease was active during the time I was feeling tired. What I should've done then was get a colonoscopy before reducing the drugs to rule out an active disease.
I'm on prednisone now and will be starting Immuran in two weeks. Before reducing your medications you should have a clear understanding at where your disease is at the moment is the lesson I learned from all this.
I know colonoscopies are hard but there really is no other way it seems.
I hope things only improve for you. Keep us posted.

i would not change a thing at this point - there are many possible reasons for your fatigue - any one or a combination of them - just try to live with it a bit to see, if as others suggested, your body is healing but hasn't quite gotten there yet -

get as much rest as you can - and enjoy being lazy if possible - it will not last forever

One way of lowering the dose of Imuran or 6MP but retaining the same effectiveness is to take it in combination with allopurinol. That reduces side-effects, but I don't know if that would include fatigue. At the least, it seems worth a try to me. Try googling azathioprine + allopurinol for more info.

Edit: Also, consider switching to 6MP. Apparently half of people who can't tolerate azathioprine (Imuran) can tolerate 6MP - that's far higher than I actually thought, but it's what this article claims.

www.gastrohep.co.uk/ebooks/irving1.pdf

Post Edited (NiceCupOfTea) : 2/23/2016 5:49:50 PM (GMT-7)