HealingWell
Search Close Search
☰

Remicade....good. Low WBC.....bad.

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/1/2016 1:26 PM (GMT 0)
Hi Everyone,

I have been getting double doses of remicade every 4 weeks for the last few months and have finally got this beast under control.

But I feel awful. My WBC keeps going down every single dose. Now it is at 3.2. (And I don't presently have any infections....that I know of.) My GI does not seem too concerned. I think it is time to back off the remicade.

Has anyone else experienced something similar on remicade? Of course, a google search of low white blood cell counts just brings up the big C. And the fatigue I am feeling lately has me concerned.
Posted 4/1/2016 1:33 PM (GMT 0)
My WBC also reached 3.2 (my test says anything below 3.8 is out of range) but it was while on 6mp and my gastroenterologist response was to lower my dose of it. If you get in the high 2's infections can quickly become sepsis, require hospitalization, in summary not safe (NSSG got sepsis due to this).

Maybe get another CBC test just to make sure there's no error?

I'd press them on this and get a second opinion if necessary...
Posted 4/1/2016 3:17 PM (GMT 0)
yeah, i've had this problem on simponi and my only solution is pushing back my shots later than every 4 weeks. sometimes i can't make it as i start to feel a little crampy. my gi doctor doesn't seem to care at all though.
Posted 4/1/2016 3:18 PM (GMT 0)
Yes I remember a few of you got sepsis. But weren't you sick before getting sepsis? The weird thing is that I don't get viruses or anything despite being around kids that seem to be alway sick.

I don't think there is an error because it was 3.7 last month and about the same the month prior. My lab says anything below 4.5 is out of range. (Maybe different for women and men?)

I think I am going to see my primary care physician and see what he says
Posted 4/1/2016 3:20 PM (GMT 0)
Bacongirl - that is what I find irritating. Every GI seems to have the same attitude - your UC is better. Problem solved. Forget the other stuff. errrrr irritating.
Posted 4/1/2016 10:03 PM (GMT 0)
yep, exactly. the infusion center would always freak out about it and even when i was in the hospital, they said it was dangerous and wouldn't let me leave my hospital room!! i always have masks now and wear one if im going out in public around a lot of people. i get really nervous though being around my baby nephew because of all his live vaccinations. i feel like i'm doomed sometimes.
✚ New Topic ✚ Reply