White cell yo-yo : I had to come off plaquenil 2 1/... - NRAS

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White cell yo-yo

weathervane
weathervane
18 Replies

I had to come off plaquenil 2 1/2 weeks ago as my white cell count and neurophils were severely low . They went up and now they have gone down again , the rheumy nurse checked back and they have been doing that from august , they went up quite high at one point but have plummeted again . The rheumy nurse is going to talk to the consultant about it and hopefully get back to me tomorrow as she can’t understand it . The gp thinks that will have to monitor bloods every week . I have been very tired and achy since i came off the plaquenil , I really hope its not going to affect the rituximab treatment. I was nearly going to ask for a surgical mask LOL but the hand sanitizer will have to do 😀

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wsjkcj1

the count has gone up and down since you quit the plaquenil?

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weathervane
weathervane
in reply to wsjkcj1

Its a bit weird it has been checked 3 times and it went up and now down again over a 2 1/2 week period. The nurse thinks its highly unusual!

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wsjkcj1
wsjkcj1
in reply to weathervane

I hope they figure it out soon! In the meantime, do use that face mask. :)

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weathervane
weathervane
in reply to wsjkcj1

Ha ha😀

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Twitchytoes

Hi W. Sorry about this ongoing issue. I don’t have this problem thankfully but my WBCs and liver function are always checked because of immunesuppression. Over the years on various communities here I’ve seen many posts about this same problem. I know that Clare67 on the Lupus community has this issue too.

So I’m wondering if it’s more likely to be an autoimmune disease problem rather than anything related to your treatments? I’m sure your medical team will be aware of this as potentially part of your Sjögren’s - but I just hope that you can get back on Hydroxy and continue with Rituximab infusions soon. X

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weathervane

Thanks TW , the gp thinks they maybe didn’t keep a close enough eye on it , though my normal/before treatment was low anyway .

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Twitchytoes

As I say I think I’m quite unusual to be an autoimmuner with a mostly normal WBC.

I wonder if taking you off Hydroxy was just a bit of a knee jerk reaction? When I came off it for first MS-like symptoms, I had a jumbo flare. Then later when I had to stop it for anaphylaxis, same thing happened

I’ve never read that Hydoxy lowers WBC but I’m sure Rituximab and other DMARDs can. But then so can our diseases.

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weathervane

Its the chicken and the egg, my wbc was up and down since August before going off plaquenil so it could be the rituximab or the disease .

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Twitchytoes

Poor you W. Everything is chicken as egg for so many of us. X

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weathervane

Very true xx

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Twitchytoes

I do really understand how spooky it can feel. I’ve just noticed that my latest blood results show low Albumin levels - looked this up and got rather freaked out. Hoping like mad it’s a one off! X

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weathervane

Checking quickly it says it’s usually caused by inflammatory response, dont read anything else x

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Twitchytoes

Okay promise! Xx

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Nettac

I remember my rheumatologist once saying they always worry about white cell counts. I think to do with the actual disease.

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Nettac

Meant say...mine have bounced around a bit.

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weathervane

Thanks , i hope to hear from rheumatologist soon will let you know if she knows the reason.

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Hobbits

Hello, I just had this issue and my Rheumy said it’s nothing. He said anything can affect the levels from taking a new Med ( for me polyprolactic antibiotic) to being exposed to virus or germs, you may not even know your body is fighting. My levels often raise into the abnormal on my blood tests. My Rheumy told me it’s nothing to be concerned about.

Anything in the abnormal range is concerning.

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weathervane
weathervane
in reply to Hobbits

Thanks hobbits, at the moment im tired and sore as off plaquenil, otherwise im ok and ive avoided infections despite the really low WBC . I suppose I just want reassurance that all is ok and i can carry on with treatment . I hope you are keeping well, best wishes.

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