Methotrexate and low white blood cell count - NRAS

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Methotrexate and low white blood cell count

fionam profile image
18 Replies

I've been told to stop taking Methotrexate after a blood test showed a low white blood cell count. I've got to have another blood test on Friday to see whether I can go back on MTX. I'm really worried now that my symptoms which have been really well controlled since last Sepember may all come back again.

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fionam profile image
fionam
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18 Replies

Hi Fiona. I haven't had this experience yet thankfully but a friend of mine who is a GP told me a while ago that one of her patients had the same thing happen as you have and she phoned the specialist nurse and was told to retake the test a few days later by which time it was back to normal again. I guess it depends how low they get but I know others on here have had this experience too so will be able to tell you more. Hopefully it will just be a one off and you'll be back on MTX very soon. It should remain in your system for a while anyway so hopefully the symptoms won't just come back any time soon. Tilda

fionam profile image
fionam in reply to

Thanks - hopefully I'll have the same experience.

Hi Fiona

I have had spells where I have had to stop the MTX for short periods, and like you I worried too, but fortunately I had no major issues, soon got back on it, with no adverse effects. Better to be safe, cause if blood cell counts goes too low for too long you would feel really pretty rubbish.

Take care

Hazel

fionam profile image
fionam in reply to

Thanks - it helps to know that I won't necessarily have to give up the MTX for good.

hello, I've been having this problem on and off all year, I was taken off it for 6 weeks and thankfully only slight swelling that didn't break into flare; I went back on for 3 weeks and White cell count dropped again, so, this time i've been off it fr 3 weeks and fingers crossed, so far so good.

I can feel when wcc is low now, I predict my results before my nurse gives then to me, normally my RA is very quiet but I feel tired like I'm fighting infection.

Hope you get sorted soon :)

fionam profile image
fionam in reply to

Thanks for sharing your experience - hope things go on well for you.

in reply to

I take the methotrexate for another reason, Sarcoidosis. I noticed in my last blood test my white cell count is down, and yeah I feel wiped out like I am fighting getting sick.

elsa123 profile image
elsa123

It sounds like there is a chance that it could be a blip for you.

Hope it improves.

cowpat profile image
cowpat

keep telling us fiona...the very best of luck.

fionam profile image
fionam

Thanks everyone for your support. Keeping my fingers crossed- as long as they don't seize up of course! and hoping for good news after blood test.

mille profile image
mille

It will take the mtx a while to get out of your system so hopefully you wont feel any worse. I have heard people say that folic acid helps with all the side effects that mtx can cause. Some people take 5mg up to 6 days a week but check with your GP first. and dont take it the same day as mtx x

VirginiaG profile image
VirginiaG

Same thing happened to me last week--extremely low white cell count. Stopped all meds for a few days and was put on cipro (in case it was viral) and leucovorin (counteracts Mtx) for a few days. Oh, that was no fun! Got a couple of B12 shots too. Count was back up a couple of days ago. Rheumy put me back on prednisone and meloxicam but is holding off on Mtx and others until further testing. He's concerned about Felty's (RA + spleen see nlm.nih.gov/medlineplus/enc... ) so is continuing tests.

So, we'll see what happens. May have been a blip for both of us. Fingers crossed!

fionam profile image
fionam in reply toVirginiaG

I hope so - good luck!

joseph1962 profile image
joseph1962

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fionam profile image
fionam

Thanks for this. Fortunately my white blood count has gone up naturally but I'll bear this treatment in mind in case the problem recurs.

Angels54 profile image
Angels54

Hi I have been on MTX for 6wks just had a call to say my white cells have dropped, feeling quite anxious now.

Chloes_Shadow profile image
Chloes_Shadow

I have had the same issue twice now. Both times I had to redo a “STAT” CBC. The second one, two days later, always comes back normal or near normal. When I was able to finally see the doc that prescribed The methotrexate he swore that he had ordered 1 mg folic acid when he gave me the methotrexate. Of course this was not true or I would have filled the prescription since that is the only way to get folic acid in that large of a dose. I told him he had not, but he looked at me and shook his head seeming to say how sorry he was for me that I had forgotten. Of course he could have checked his records, but he was running an hour late, they didn’t have my appointment in their system even though i stood there and put it into my date book and my phone while standing there, and he was sick himself. He didn’t want to answer my questions, but that seems to be the way he runs his practice. I know... new doctor search underway before next appointment. I would suggest that anyone on methotrexate talk to their RA doc about the folic acid and get a prescription for it. Good luck! I’m hoping I get back on in a month after taking the folic acid. Have CBC once a month for next two months then back to see him :(

Peacox profile image
Peacox

I’m in a similar situation. I’ve been on Sulfasalazine and been having a bad time. I have low white blood count now and low lymphocytes. I know this is not good and am very anxious. Again, anxiety is very bad for my RA. I’m on two weekly blood tests again now and have stopped the Sulfasalazine. I still take hydroxychloroquine. I understand your concern, I feel the same — just really worried. But like people here seem to be saying, the Rhuemy teams are used to all of this, they know what they’re doing. Well, that’s what I’m trying to tell myself. Take care. I hope it gets better for you very soon.

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