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Date Joined May 2006
Total Posts : 1177
Posted 4/19/2008 8:48 AM (GMT -7)
As I mentioned in a previous post, my husband has been in the hospital for the past month, with c-diff and crohn's. He got his first remicade infusion on April 10th, and is due for his next infusion on April 24th (Thursday). However, I've noticed some changes in his blood work that are concerning. They take a full cbc every couple of days or so, and since starting the remicade on Thursday, we've noticed that his blood work is getting worse:
a.) His hemoglobin has fallen from 13.5 to 11.0 (today)
b.) His hematocrit has fallen from around 40 to 32.5 (today)
c.) His RBC count has fallen from 4.46 to 3.5 (today)
d.) His platelet count has fallen from around 750 to 585 (today)
I know his platelet count is high, but I think it was high from the bleeding, and has been falling since starting the remicade. This is what I find scary - his stools (diarrhea) no longer show any blood, and he's able to eat. Why is his hematocrit, RBC and hemoglobin all falling? Could this be because of remicade? Have others had this happen? After reading some, it sounds like this is a more serious side effect of remicade - could be anemia, hemolytic anemia, pancyt
openia or even lymphoma.
I pointed this out to the doctors yesterday, and one of them said that there could be numerous things contributing to this, including the high doses of solumedrol that he's on (though I haven't read anything about
solumedrol causing low RBC counts). Basically it sounds like they won't even start worrying until his hematocrit hits like 25 or lower.
Am I over-reacting? Is this to be expected? If this is caused by remicade, will just stopping remicade fix it? Should we continue with the second infusion of remicade on thursday? Please help, I'm really worried.
Thanks a lot.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain
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Date Joined Jan 2003
Total Posts : 492
Posted 4/19/2008 1:13 PM (GMT -7)
I was on Remicade for about
18 months and I now take Humira. Since beginning these drugs, along with 6-MP while on Remicade I have yet to get blood tests back that are normal. His physician will monitor his blood and do regular tests to ensure that he does not go too far out of range, or develop a blood disorder.
Try to relax a bit and trust that his doctors are doing what is necessary for him to recover and regain his health. As I recall your husband was extremely ill and it will take awhile for everything to get under control. Unfortunately for most crohn's patients we have to live in he** for what seems an eternity before our medications have time to make a difference.
Best wishes for your husbands recovery, and your sanity while you play the waiting game.
p.s. You remind me so much of the way my husband worried over me when I first became ill. You want to take it all away and all you can do is sit and pray and watch what he goes through. It's a tough job, I am glad he has you in his corner. Trust me when I say it makes all the difference in the world.
Dx'd with crohn's 1983, resections 83,85 and 89 Double Strictureplasty 2005, Dx'd COPD 2000, Psoriasis 2002 and Fibromyalgia 2005.
Currently takeing Humira, Pentasa, Lomotil, Elavil, Sinemet, Skelaxin, Advair, Abuterol, Oxycodone and Xanax as needed
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