Well, unfortunately it turned out to be too good to be true… Imuran initially appeared to be the medication of choice for me. Having run out of options with steroids and experiencing a very rough steroid-rebound flare and a hospital stay, my doctor put me on Imuran.
I was fully-aware of the side effects but felt confident that this was the right drug for me. In fact at one point I really became emotionally-dependent on Imuran – convinced that without Imuran I would surely get sick again. Well, it turns out that Imuran made me sick.
For the first three months, I felt really good. My energy was on the rise. My colon was happy. And I generally felt like my old self. But then slowly but surely I began to feel extremely fatigued – I initially chalked this up to getting back to training. Then my hair started to fall out. Next came pretty severe chest pains. On top of this I had chills constantly and some stabbing pains in my left side.
Luckily when I went for my weekly iron infusion, I mentioned the fatigue to my nurse – she told me to call my doctor. Well after four hours in the emergency ward and a range of blood tests, I learned that it was the Imuran that was making feel so rotten. I was on 150 mg of Imuran so we dropped this to 100 mg, in hopes that things would normalize. My white blood cell count was hovering just around 4 (considered the bottom of normal) and I had an Imuran-induced anemia.
Well, as of three weeks ago, I’m no longer taking Imuran. With each further reduction of my dosage, my white blood cell count continued to drop. Two weeks ago my white blood cell count was at 3. So now I’m going for weekly blood test to monitor my white blood cell count and liver function. I’m only taking Asacol now (800 mg/day).
I’ve noticed that I do have more energy and the chest pains have gone away. But I also think the increased energy is because I’m not really able to do much right now. I’ve had to stop going to yoga and I’m only able to ride for one hour a day (I used to do multiple days of three hour rides with no rest days).
To say I’m frustrated would be an understatement. My cyclo-cross season starts in September and while my competitors are out training and pushing their bodies, I’m forced to rest and wait. I’m confident that I’ll be able to start the season healthy and I do know that there is no point in training when I’m not 100 per cent – but at the same time this is hard to take.
Luckily my colon is feeling good. I was really worried about going into a flare after stopping the Imuran – particularly since I don’t have many medical options left (Remicade or surgery). I know some of you reading this will wonder why I don’t try the SCD – well I tried it last year and it is really hard to train on this diet. To do SCD I would have to wait until February when I’m in a complete rest period. I have decided to switch to a vegan diet and see if this makes a difference in my energy levels – I’ve been reading Brendan Brazier’s books about veganism and a healthy body – I think this could work for me.
So, as I sit here right now, I’m waiting to hear from my doctor about my recent blood test – hoping that my white blood cell count has increased. I also need to find out about getting back onto my regular iron infusions. I suppose the appropriate term would be: waiting game.
I’m curious to hear from others who were on Imuran and have had to stop taking it. What are you doing now? How long did it take to start feeling better?
