Well, it has been a long time since I’ve written on this site. I suppose since I’ve been feeling pretty good, I really just haven’t been thinking about ulcerative colitis. I have been keeping up-to-date with everyone else’s posts and I realized that I need to get busy and write a post… so here goes.
As you can guess by my title, I’m on Imuran. I’m also on Asacol. And for the most part, my body has adjusted well to these medicines. I’ve been in a remission since mid-January and all signs pointed to this being the medicine for me. I’m also doing iron infusions every other week to get my iron up to a normal level for an elite athlete.
Really, everything was going well until I started to train hard again. I began to notice that I was quite fatigued and assumed it was due to the additional load I was putting on my body and really assumed the fatigue would go away as I regained my strength. Well, I have built up some strength but it is nowhere close to where I had hoped to be by now and I noticed that I couldn’t do two long rides back to back. I automatically assumed it was because my ferritin levels were still very low.
But after much poking and prodding of my veins, it turns out that my ferritin is on the way up and is sitting at 58 right now. But what I did learn is that the Imuran is the culprit. Turns out my white blood cell count is too low now. I also learned that my red blood cells are too large. This is called: macrocytosis and is a type of anemia. Apparently this is a common side effect for people on Imuran.
When I found this out, I had a couple of very rough days. I guess I have become emotionally attached to Imuran. It is the drug that has kept me in a remission for longer than I can ever remember and I see it as my only hope in getting my life back. So I’m actually quite afraid of not being on this drug. When my doctor told me that the Imuran was the problem, I immediately started to stress – I really don’t want to go the Remicade or surgery route. But first things first, my doctor took me off of Imuran for three days and has now reduced my dosage from 150 mg a day to 100 mg a day. I’m hoping this will work. I’ve also started taking folic acid since this is very low.
I had more bloodwork yesterday and my white blood cell count is rising – but I don’t know anything about the size of my red blood cells. I’ve started eating more iron fortifying foods like broccoli, raisins, blackstrap molasses and have added in coconut oil since I read that this can be beneficial for people with ulcerative colitis.
As it stands now, well I’m doing my best to feel optimistic. I did get in some excellent rides over the Easter weekend and I do feel better. I am wondering how much of this is psychological though since I do now know that my ferritin level is increasing. But I suppose the psychological component is a big part of feeling better.
I don’t know how long it will take for my red blood cells to normalize or for my white blood cell count to stabilize. Now the concern is that my white blood cell count gets too high.
Anyway, this is where I am. Generally in a good place, but still full of lots of self-doubt. I have to say thanks to all of you for sharing your stories and for commenting on one another’s posts. Where I live there is not a support group for people with ulcerative colitis. I contacted my local chapter of the Crohn’s and Colitis Foundation of Canada and was told in a rather rude email that they did not believe in support groups in this area since it would just be a bunch of people whining and complaining… So I’m very happy to have this web site. (I also don’t think that a support group is for whiners and complainers – but that is another matter altogether.)
I’d be interested to hear anyone’s experiences with Imuran – good, bad and ugly.
Oh, and to brighten your day and to remind you that anything is possible, here is an article about an elite bike racer who has a J-pouch: Dewey Dickey.
I’ve felt similar about Imuran, because I was doing really well on it for a while. I started to have more frequent flare ups as of late, and needed prednisone more and more often.
When the doctor tried to raise my dose from 50mg to 75mg, I ended up getting ulcers in the back of my throat…
So, since that occurred, and when he dropped my dose back down they went away, I guess I’m now looking for other medicinal therapies…
I hope that all goes well for you!
Hi Cassandra, I was reading your post about imuran and was wondering what your symptoms were with ulcers in your throat.
I have a scratchy throat everyday and sometimes feels like food gets caught for awhile.
I’ve been on imuran since 1999 when I was in hospital for 3 weeks. I was on 100mg a day up until Jan this year when I had my 1st flare up since 1999, they have increased my imuran to 150mg and now i’m also on mezavant & pentasa but when I go back to clinic they will start to reduce what i’m on. My red blood cells are larger but are within a certain range that they allow and when i’m well the white ones are within range. It look me a while to get back training and you just need to be a little patient but I was able to get back to what I was doing. As my imunne system is supressed with the imuran I do tend to pick up colds and sore throats but i find a good cold & flu medication and an early night normally does the trick. I can live with that rather than the pain I was in with my UC. I hope I can get another 11 yrs before I have another flare on the imuran. Hope this helped.
I’m so happy that I read your story as I too feel the same way about Imuran (or Azathioprine here in the UK).
When it became apparant during my last flare that steroid treatment no longer worked for me, & the decision to start Imuran was made, I was really nervous as my GI consultant had mentioned various side effects & my GP had expressed his views on the drug & wasn’t a big advocate.
But my god – I’m SO glad I agreed to it! My GI has started me off very slowly with it – 100mg a day though as it’s measured by my weight & I’m heavy from steroids I should be on 200mg- but even at this dose I’m feeling so much benefit. I was beginning to think that I was going to have to live with the reduced quality of life, pain & embarrassment etc that this disease brings us, with no real hope of a treatment ever working, but Imuran has restored a bit of faith & I too have become emotionally attached to it.
I don’t seem to have suffered any side effects directly related to Imuran, & my quality of life has really improved.
I’m still tapering off my Pred (just 3 weeks left to go!), am also taking Mesalazine (Asacol) & am supplementing with probiotics which I also believe are having an amazing effect.
However, around a month ago I started to suffer from crippling, stabbing-pain headaches in the right side of my head, specifically in 3 places. Everyday I wake up with them, & they continue to hound me through the day affecting my concentration & occasionally my sight, despite taking painkillers. So, my GI had me go for a MRI scan to try to identify the cause.
I’m now petrified that the reason could be the Imuran, & that my GI will take me off them. I’m waiting on the results of the scan, & I really don’t want Imuran to be the culprit as, to me, it’s a wonder drug.
I have been told that I’m severely anaemic & I am supplementing with iron, vitamin B-complex that has a high B-12 content & zinc……I suffer with dizzy spells/vertigo because of the anaemia so I’m hoping the headaches are part of that.
I’m waiting to see my GI (the hospital keep postponing my appointments – grrrr!) to discuss where we go from here, but I’m hoping for good news.
I’m happy to see that you’ve been kept on Imuran & I hope it continues to work for you, & hope that, along with the increased iron intake that you’ll be back to riding at full strength very soon.