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Low White Blood Cell Count

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Posted 3/8/2012 5:13 AM (GMT 0)
Hi everyone!

I have not posted here in a little while, I always read the other posts, but I am in need of advice. I have been on Remicade (every 8 weeks) for almost a year now, but in November it started becoming less effective, and a lot of symptoms have started returning. My GI suggested it was possible that I received a "bad batch", and to give it another shot. I got another infusion in January and same thing, no relief from symptoms. I have been getting sicker and sicker since November and in the last two months my energy level is around 2/10. My GI ordered a Remicade antibody test from Prometheus Lab, but I have not received the paper work yet, and I am also responsible for paying for the test which is going to be about CA $800.00. If I do test positive for antibodies, the idea was to change biologics.

Now another problem has been thrown into the mix. I get monthly blood work, and since November my white blood cell count has been decreasing. I take 6MP as well, so this is not all that abnormal, however this month it has reached 2, which is quite low. It is difficult to know what to do next. My GI had me get another blood test yesterday, to see what my WBC is looking like. If it above 2.5 I am going to start doing Remicade every 6 weeks instead, so even if antibodies are forming, a more frequent dose will slow the formation. If the WBC is still low then I will either have to decrease or completely stop my immunosuppressants and start Prednisone again, which I really don't want to do!

Also, as a precaution to the low WBC I am doing two 24 hour urine collections to test for carcinoid and other tumors, which is a little daunting in itself. I guess what I am wanting to know is, has anyone experienced anything like this before? If any one has, even just the low WBC, What did your Doctor do as a treatment plan? Would you stop taking the 6MP if you were me, or would you be too worried about the effects of that? Also, has anyone had the Remicade antibody test from Prometheus Lab?

Any and all help or advice is much appreciated! Thanks everyone :-)
Posted 3/8/2012 11:28 AM (GMT 0)
Sorry you're having such a rought time. In answer to the WBC questioin -- I would stop the 6MP. I've been through this same thing and as soon as my BW came back the GI called and said I had to stop the medication. We retested and my counts came back to normal. Tried it again, same thing so I was off all immume suppressentants for a couple of years. We just tried immuran @ 100mg/day since October & my counts are stable.

Not sure what to say about the "bad batch" comment from your Dr. That's the screwiest thing I've ever heard. But what I will tell you is that when I knew I was having problems with Remicade and I called my GI out on it, he admitted I needed someone with more knowledge of CD than he had. That's what sent me to an IBD specialist who has been managing my disease for the past few years. You might want to consider another opinion -- JMHO.

Take care.
Posted 3/8/2012 11:37 AM (GMT 0)
6MP can cause a low WBC, so I'd be inclined to give that up and carry on with the Remicade. It will probably help with your fatigue too. Good luck.
Posted 3/8/2012 1:44 PM (GMT 0)
I agree with the above posters, I'd stop the 6mp. I was successfully taking 6mp for almost 3 years when out of nowhere my WBC count started to drop. One week it was a little low. 4 weeks later I was in severe bone marrow suppression, not only was my WBC count low but also my RBC, Haemoglobin and platelets. I got told that the blood tests showed my bone marrow wasn't making red blood cells any more. My WBC count got down to 0.5. Further blood tests showed it was the 6mp causing it (I wasn't on anything else for the Crohn's and it was definitely medication induced so it had to be the 6mp). Since stopping it 6 weeks ago, my blood tests are almost back to normal, just waiting for my Haemoglobin to go up a bit more. Obviously speak to your Dr, but I would stop the 6mp before things get as bad as it was for me.
Posted 3/8/2012 3:21 PM (GMT 0)
Thank you so much everyone for the advice! I guess I am just nervous about stopping the 6MP and going into an even worse flare, but I don't think it is worth the risk of staying on the 6MP. I get my results of the most current WBC count today, so I hope it is going to look a little better.

Regarding the Remicade being a bad batch, I was a little shocked to hear that as well, as I have never heard about anything like that before. I talked to my GI yesterday and she said it was possible that at some point in transport it might of gotten left out, and not refrigerated. I guess it is possible, but I am thinking they are pretty careful about things like that! I hope so anyways! confused
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