Low neutrophils/ neutropenia on TCZ. How long ti... - PMRGCAuk

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Low neutrophils/ neutropenia on TCZ. How long till neutrophil levels get back up?

Erikaknitssocks profile image
3 Replies

Low neutrophils/ neutropenia on TCZ?

Hi folks, I was wondering if anyone who has experienced this happening can give me some of idea how long it will take to increase? It’s worrying as I’ve had to stop my Sulfasalazine and TCZ (weekly injections) this week. I take both for RA and LVV/GCA . After high dose steroids & steroid infusions last year for the LVV/GCA, I was able to taper completely off steroids, without withdrawal, after the TCZ began. ( When I’d tapered off steroids the previous year the withdrawal was awful) . Of course I don’t want symptoms to flare again but my neutrophils this week are .4 and my rheumatologist said he wants me above 1? Sorry, I never thought to ask him and I don’t want to be off these drugs that have been effective for me, but nor do I want to get ill from something else 🤷‍♀️ Thank you

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Erikaknitssocks
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agingfeminist profile image
agingfeminist

You need to get some answers from your doctor. But my neutrophil count is astronomic...the steroids remove them from the bone marrow and they hang around longer in the blood than usual. But it is also possible to get low neutrophil count on steroids. There are of course other reasons for getting high and low counts. Perhaps also worth your doc thinking about them.

GratefulBailey profile image
GratefulBailey

Hello,I also am on Actemra (GCA) - bi- weekly - and developed low Neutrophils (1.2) and low WBC. My rheumatologist had me change to injecting every 3 weeks for 3 months. After I started getting subtle intermittent eye pain, he had me go back to my bi-weekly injections and my blood work showed an improvement in Neutrophils (3.5) and WBC. I am extremely sensitive to all medications, so it was no surprise to see this. My rheumatologist told me to monitor my results; if the numbers go below 1, try injecting every 16 days…a bit of trial and error. He informed me that Actemra can cause low Neutophils and WBC counts. He also said once I’m off Actemra, my Neutrophils and WBC numbers will return to normal. There are no magic supplements or foods (that I know of) that will return the numbers into the normal range.

I hope this helps.

Good luck!

Erikaknitssocks profile image
Erikaknitssocks in reply to GratefulBailey

It does, thank you GB, I will contact the rheumy nurse and discuss putting in an interval between injections 🤞🏻🤞🏻

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