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I have Lupus/Fibro and been on methotrexate(Oral chemotheraphy drug) for a few years now but it has always interferred with my white blood cells. When the cells have dipped below what they should be leaving me open to infection my Rheumie Nurse has asked me to stop for several weeks before recommencing the drug. After several episodes like this I have decided to stop taking Methotrexate. The first month was agony but I have decided not to recommence the drug. I await advice from the Rheumatology Dept, but can anyone tell me in the meantime, if they have taken this decision and what the outcome was for them. I am a bit scared(its like loosing my security blanket) but believe this is the right decision for me. Thanks.

5 Replies

Alexandria - I stopped taking MTX in October 2011. I had tried upping the dose of folic acid to 6 days a week, as advised by my rheumatologist, but I still felt awful for 2 days after taking it. So I stopped, and by December 2011 I had the beginnings of lupus nephritis, and by March this year I had kidney failure.

Sorry to not be more positive - but my advice is to wait until you have seen your rheumatologist and then stop, when you have something else to move on to.


I should add - I am alright now - but only after 6 months of chemo, which was extremely unpleasant. And I have only 45% kidney function.

I don't want to scare you - this is only what happened to me - I was under a lot of stress at work too, and no doubt that helped push me into kidney failure, too.


Hi I agree with Maggies you should wait to see the rhemie then they can start you on something which will suit you better,, I am on Methotrexate and it suits me fine now I am injecting it, hope you can get sorted very soon



I have only been on methotrexate since June I too suffer with infection (before starting this) and I also take Hydroxychloroquine. I have been on antibotics for about twelve years and toch wood it does the trick don't get me wrong I still get infections but nothing like I use too. Whatever you decide I wish you all the best.


Thank you all so very much for your replies, I am due to see my Rheumy consultant next week and will discuss my situation then. Many thanks.


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