Hi guys, help! Advice please! I've had some problems over the last month, My numbers have dropped 2 weeks ago neutrophils were 2 and haemoglobin 3.6 and last week they'd dropped again to 1.7 and 3.1 Last week Rheummy nurse said inject as usual but this week the advise is no methotrexate. Should I be worried? Is this level really low?
I'm dreading being off methotrexate as it took two years to get the swelling in my arms down to something resembling normal-ish and I'm terrified of them ballooning up and being unusable again. I don't want to return to that hell again - even morphine and steroids could not control the pain or swelling. M x
update: Rheumatology says I've to get more bloods tomorrow and see if it's dropped again. I'm now beginning to worry a little bit. M x
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marie66
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Same happened to me. Been told to stop methotrexate two weeks ago due to white blood cells and neutrophils being low. I am in remission but after week one with no methotrexate I started feeling some aches and stiffness in some of my joints and felt very tired and heavy in general so freaked out a little bit as it took me 2.5 years to start feeling OK. Now week two I feel normal again.
Just trying to stay calm and not stress about it as stress always leads to pain and swelling for me.
I had mild neutrophilia few times since I started mtx 3 years ago. Normally they were just monitoring my blood closer and more often and it gone back to normal. Not sure why this time is different but I am sure whatever the rheumy advice is it's for our good!
Trust your rheumy, she's following up. If you do have to stop mtx, remember this sort of thing happens quite commonly. Quite often if you stop you mtx for a few weeks, everything goes back to normal. Sometimes you can start again with no recurrence. Try not to worry, get your bloods done and follow rheums advice.
Best,
Lily
When you consider it takes about 12 or more weeks for MTX to take effect, missing 1-2 weeks shouldn't make much difference. After all, if you had an infection and took anti biotics, you would have to stop MTX while taking them.
When on higher doses of MTX, I regularly had low neutrophils with one or two week breaks to get the count up again. It seems you are getting excellent care, exactly what should be done to ensure your health bounces back.
I had a problem with my neutrophils reading 2 years ago. My nurse rang and said the reading was 1 after my blood results cane back , she told me to go and get my bloods done again, the next day she rang again to go back to say the reading was .5 I had more bloods done and got a phone call later that day to say my neutrophils count was zero and I needed to get to the hospital and would be admitted into isolation for fear of infections I got there and was kept in the side waiting room for 4 hours waiting for a bed in isolation. No beds came available so was put on a general ward in a side room they took me off my methotrexate and my biologic abatacept, they kept checking my bloods and after 2 days they gave me an injection to bring the neutrophils up and after 12 hours they came up to .5. The consultant came in and told me that i would be safer from infection at home so he sent me home .the neutrophils count started rising on its own from then on. What i found quite worrying was the fact that no one seemed to know what to do with me. During all this episode I felt fine by the way.
It won’t be anything to worry about Marie sometimes it happens my consultant was happy when it came up to one, and if it does go very low they will give you an injection in your tummy to bring it back up x
Your blood counts being really low can be dangerous giving you no immunity to infection hopefully they will withold for a little then introduce lower dose your body is just responding too well to it
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