I STOPPED METHETREXATE

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I on 25mg injection methetrexate. I stopped it myself 2 months ago, as it makes me feel so bad i have to stay at home the day after i have it as i feel like i have been hit by a ton of bricks, i go to bed as i cant do anything else, gets headaches etc. so i decided to stop it to see just how i got on as iam on toxilimubab(cant spell it)  weekly injection, i havent gone any better apart from my esr levels have gone normal, but my joints are so painfull and hands swollen.  I just had a worse night of my life never had so much pain in my swollen knee, shoulders hands etc.  without me ringing rhumy nurse, i wonder if it would be ok just to start back on the 25mg injection,  as it is a pen now and not a vial. has anyone esle done this, i know now i have been very silly. HELP.......

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6 Replies

  • Posted

    Hello Julie,  you sound so poorly.  I don't know what your other weekly injection is but if you have access to an RA nurse then I would call her to help and advise you.  Hope you improve.
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    • Posted

      Hi maggie thank for your reply, i actually got a call friday from hosptial went straight away, got fited in. The nurse asparated my knee and gave a steriod injection in it, also one in the bum. i do feel alot better today, its took 2 days to work, i had blood tests to got to back see consultant in january.They are giving me till dec to see if the new drug is working, and to talk about a knee replacement. x
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  • Posted

    I hope you have rung the nurse...I have always found them very helpful although they don't work all day or every day. If you missed them today call into a chemist tomorrow or an NHS drop in centre. I wonder why you had the injections instead of the pills. Certainly when I started MTX I began on 10mg and built up slowly. I wouldn't think that you'd start with 25mg and restarting (as you suggest) at that dose sounds dubious.

    Good luck

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    • Posted

      Hi there, thanks for the advice, i ended up going hospital access clinic, had my knee drained and steriods injected. they are reducing my methex till i build up again. I had the injections as i couldnt tolorate the tablets, made me ill.
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  • Posted

    Hi Julie, My name is Joe and I'm 31. I thought I'd get back to you with some of my experiences with the methotrexate injections as some of what your explaining sounds very familiar. I have been on methotrexate for around 10 years now and have experienced many different effects from it. About two years ago I started the injections as I was getting bad side effects from the tablets. At first the injections worked well but then the same side effects started happening!  I made the decision to stop methotrexate even though the Doctors didn't advice this and see how I went! I hoped the other drug I was on (entrancept) would be fine by itself. After about a month of stopping it I had a big flare up and had to go back on it unfortunately. Since then I have reduced the dose to 12.5mg injections and this has really helped me. It is a very small dose but my thinking was that if it didn't work I could always up the dose but I really wanted to be taking the smallest amount of methotrexate as possible. It's also interesting to hear that when your joints were painful your esr was normal (same as me). Like you they have sits started giving me the injection pens instead of the syringes.  Please let me know how you are getting on and if there is anything I can help with at all or you have any questions please get in touch. Joe
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    • Posted

      Hi Joe, thank you for your interesting reply. you sound like you have been through it to.I would love to come off methetrexate completly, i did tell the nurse what i have done, so they have lowered the dose to 12 till i build it back up. i have been on 4 diff biologic drugs, i thought  it would really help but doesnt seem to. I think sometimes we know our bodies more than the doctors, on how weare feeling after taken drugs. But i have just gone worse , dont know how i would get around without pain killers. I have sero negative rhuematoid arthritis, have you joe?
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