Azathioprine and low white blood count

Posted by megwrg @megwrg, Apr 12 8:30pm

I have had ulcerative colitis for 35 years. I’ve also have a couple of other autoimmune conditions (note: I had radium taped to my back in Europe when I was 6 weeks and 8 weeks old). Azathioprine worked like a charm. About 10 years ago I moved to another state. After a couple of years the GI doc here said I should stop azathioprine because of risk of lymphoma. Entyvio infusions worked for awhile but didn’t last. I asked doc here to put me back on azathioprine but he has been reluctant though finally agreed. I’m finally back in remission and doing well.
Now my white blood count is down to 4 and the doc here wants me to cut my dose in half (I don’t think he is comfortable with azathioprine).
I’m not very comfortable with his advice (no UC specialists here). I have heart failure which makes many of the other drugs risky.
Any thoughts on the importance of that low WBC number?
Thanks!

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@megwrg
Welcome to Mayo Clinic Connect!
It’s definitely good to hear that you went into remission with Azathioprine.
I was on Azathioprine for a while too, but for a different GI condition. I stopped because I had a series of bacterial infections that were worrisome.
Azathioprine suppresses the immune system, allowing your intestine to heal.
A low WBC count when taking an immunosuppressant can result in severe infections where the body is unable to fight the infection.
This is a similar scenario as when taking chemotherapy drugs. There always is a blood count done before the dose is given. If the WBC count is low, the dose may be adjusted or postponed.
There is a risk of lymphoma- in addition to skin cancers. I’ve had quite a few small skin cancers removed.

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I actually think hour Dr’s suggestion is reasonable. A WBC count of 4000 is not too bad and as long as it doesn’t go lower, you’re probably fine. Since low WBC is a side effect of azathioprine, cutting the dose in half will keep the WBC from dropping further without taking you off it completely. The risk/reward ratio of these immunosuppressants is complicated and managing the illness is often difficult. Fortunately there are lots of drugs effective for UC. Are you in a remote area where GI specialists are scarce? Now with virtual medical visits, you could have a specialist as long as UC can be managed with discussion and physical exam is not required. Good luck with the delicate balance and I hope your UC remains in remission!

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@slkanowitz

I actually think hour Dr’s suggestion is reasonable. A WBC count of 4000 is not too bad and as long as it doesn’t go lower, you’re probably fine. Since low WBC is a side effect of azathioprine, cutting the dose in half will keep the WBC from dropping further without taking you off it completely. The risk/reward ratio of these immunosuppressants is complicated and managing the illness is often difficult. Fortunately there are lots of drugs effective for UC. Are you in a remote area where GI specialists are scarce? Now with virtual medical visits, you could have a specialist as long as UC can be managed with discussion and physical exam is not required. Good luck with the delicate balance and I hope your UC remains in remission!

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Thank you. The “simpler” drugs for UC didn’t work for me (I have pancolitis). Azathioprine worked well. After current gi doc took me off azathioprine (he called it “a bad drug”), I came out of remission and he switched me to Entyvio. That worked for a couple of years but then gradually stopped working (antibodies, I assume). The azathioprine now is working again. Besides ulcerative colitis, I have several other autoimmune conditions and the azathioprine works for some of those as well (Entyvio didn’t).
There are no IBD specialists where I currently live. I had a telehealth consult with my previous specialist about a year ago. We are on the same wavelength but doc here (who I like) got his back up a bit so I’m trying to manage while attempting to avoid riling up my current doc.

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One other thought, if lupus is one of the other autoimmune disorders you have, that can cause low WBC, particularly low lymphocytes. The low WBC may not be a problem as long as you aren’t getting frequent infections.

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No lupus but several more “minor” ones, or at least not as bothersome: Hashimoto’s, vitiligo, food allergies, possibly autoimmune hepatitis (had liver ultrasound & biopsy with result of NASH, stage 3 with reversing flow in portal vein - and another biopsy 8 months later was normal). Food allergies came back when off azathioprine, now gone again. Sigh.

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Your situation is very complicated with the AIH and azathioprine, but it is good that your 2nd biopsy was normal! I am curious if that biopsy was done when off the azathioprine. The challenges of living with AI diseases are huge. I have 4 and often think wouldn’t one be enough? We have to keep trudging on, and I hope your path going forward gets easier!

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@slkanowitz

Your situation is very complicated with the AIH and azathioprine, but it is good that your 2nd biopsy was normal! I am curious if that biopsy was done when off the azathioprine. The challenges of living with AI diseases are huge. I have 4 and often think wouldn’t one be enough? We have to keep trudging on, and I hope your path going forward gets easier!

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I don’t recall my azathioprine status when I had liver biopsy, I think I was on it for both. I definitely agree that one ai condition is more than enough. Now I have heart failure, too so I feel like I need to learn juggling! Every now and then I do some in-depth reading of medical journals to get a sense of anything new.

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