Low White Cell Count?: Just seeking anyone that has had... - NRAS

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Low White Cell Count?

Domhem profile image
12 Replies

Just seeking anyone that has had a similar situation, since November I’ve starting having a low white cell count (2.9, 4.5, 3.4, 3.1) I know the 4.5 is fine. I’m waiting to hear from my rheumatologist but I’m guessing they will make me pause for two weeks and retest. I’m on azthioprine, humira and low dose pred. My question is if anyone else had this happen and if so did you switch biologic as I’m guessing that will probably be the only solution? I can’t keep being on and off meds if this keeps happening. This has only started since taking humira which I’ve been on since February 2020. Thank you

12 Replies
Mermaid11 profile image
Mermaid11

Hello, similar has happened to me. I started benepali last February, no one told me but my nutraphils had dropped since October last year, 1, 0.7, 0.8, 0.5 in December I then caught an infection and was told to stop the benepali. Ive recently been on a 3 week course of steroids to help with the joint inflammation, and now I have an appointment with hematology in March for further tests. Ive been told to not go back onto the benepali and my consultant will do a face 2 face appointment after the hematology test results come back. Possibly to start a new treatment. Ive not been told much else, other than they need to find out why the nutraphils have dropped so low in a short space of time.

Domhem profile image
Domhem in reply to Mermaid11

Hi, so sorry to hear that, yes those neutrophil levels are too low, worrying no one thought to tell you? Mine has been picked up by my GP as they prescribe the aziathioprine and the pred not rheumatology. Well hopefully the stopping of the Benepali should help your levels get back up to normal and then they can try a different medication as it seems the only option. Can I ask was the Benepali working?

Mermaid11 profile image
Mermaid11 in reply to Domhem

It took quite a few months but i did feel like the benepali was working, I had been off work for 9 months and returned last August so felt I was making progress. Then caught the infection in December and never felt so awful. Maybe if my gp or rheumatology had of told me of low nutraphils I could have been more cautious at work as I work in retail. Thank god you've been made aware and can keep an eye on future blood tests. Have they told you that they will change the biologic your on?

Domhem profile image
Domhem in reply to Mermaid11

Yes they have a standard of care and to let yours drop that low without notifying you or taking action is unacceptable to be honest. I’m so sorry you had to find out the hard way. Yes I think that’s what may happen, they’ve put in a consultation beginning of March and will go over it all then. I have two small ones who are home at the moment but once they return to school and nursery they will be bringing all sorts home so need to get it sorted out. Hope you reach a resolution with your team and start to feel better again

Mermaid11 profile image
Mermaid11 in reply to Domhem

Thank you, I hadn't thought about it until now. But yes, your right I should have been told. I hope your appointment goes well next month, let us know what they decide to do. Take care 🙂

Domhem profile image
Domhem in reply to Mermaid11

Thank you and you too, it’s never easy! X

allanah profile image
allanah

Happened to me , I'm sorry I cant at present remember what drug I was on, but they changed me to another biologic and I was fine x

Domhem profile image
Domhem in reply to allanah

Great thank you, this is good to hear, hope it’s a simple solution! X

allanah profile image
allanah in reply to Domhem

Mee too ! Fingers crossed but yes I was regularly on off on off and thinking it might have been when I was on Humira?

Domhem profile image
Domhem in reply to allanah

Okay well that’s interesting, I do feel better but not as well as I had hoped so maybe trying something else will be a good thing. Got to try and find a positive! X

Mmrr profile image
Mmrr

I've had neutropenia for 4 years now, my count hovers around 1.4 - 3.00. The biologics specialist asked for a haematology opinion, they advised the count could go to 1 without me having to stop or change meds ( I've been on 8 DMARDs / biologics / TNFs).

So far I've been fine with only a few minor viral infections which settle down quickly.

Domhem profile image
Domhem in reply to Mmrr

Okay, thank you so much for this, very interesting information. As it’s a relatively new issue I’m really not that up to speed on it. Thank you, I guess they may not change my meds just yet then!

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