Worried about taking Methotrexate. Was dx'd with RA/Fibromyalgia April 2013 and on Plaqunil since. Helped a little after about six months of

taking and now things have gone downhill with wrist, fingers, ankles, shoulders, hips and even in the groin area on both sides to where it hurts to even walk. My rheumy thinks that is coming from previous back surgeries and my back surgeon thinks it's the RA, but NEITHER have even bothered to take images of the shoulders or hips to find out WHICH one it is from. Everyday is a battle with this pain. I just turned 52 and feel like 102 most days. I seem to have harsh reactions to many, many meds, so this is what is scaring me pretty bad about the MTX and reading that it can actually cause other cancers scares me to death too. Any help would be appreciated. Thanks for listening.

3 Replies

  • I can understand that you are apprehensive about MTX, but please remember that often on this site you hear more about what goes wrong than what goes right! Equally, you have to be aware of all the possible side effects to make an informed decision about trying a new drug.

    All I can say is that I have been on MTX for about 5 years, and I know many others who have been on it for longer. While you are taking it you will be monitored carefully and regularly.

    It is the gold standard treatment, and for many people it is enough to control their RD. Even more importantly, it helps to prevent joint damage.

    For me it has been part of the answer, and I am grateful for that!

    I do hope this has been helpful, it is a big decision. You could ring the NRAS helpline if you want to talk about it, and their website has loads of information about all the drugs used for RD

    Good luck M x

  • I'm so sorry to hear of your struggles, but reading up too much on MTX won't help you in making your decisions I'm afraid. It is by no means a soft option & so does carry warnings as do most drugs we need to take to control RD but the manufacturers do have to cover all in the litigious society we live in nowadays & so everything has to be listed in both patient information leaflets & professional ones. It has had intensive trials & research to be licensed to be used in our case as a disease modifying drug in autoimmune conditions & the doses used are far less than those used in cancer patients. Not everyone can tolerate it, but that can be said for a lot of meds, though I for one have had success on it & have been well controlled since it was introduced into my mix of meds & is generally considered the best DMARD to start newly diagnosed RD patients here in the UK. I started on HCQ first & MTX was introduced when that didn't control me enough & then was taken off HCQ & MTX has continued & has kept me generally stable. But that is just my take on a drug I know I spin out of control without.

    A 5mg folic acid tablet is prescribed to take to help with possible side effects & since mine was upped to 6 weekly I've on the whole been fine, saving the odd blip but that just RD for you! All patients are well monitored, sometimes starting at fortnightly blood tests, changing to monthly when it's seen you're reacting well to the dose prescribed & some people once controlled only need 3 monthly tests, so every possible opportunity is taken to ensure all is well & if anything crops up that indicates something could be amiss it can then be acted upon quickly & a reduce of dose or withdrawal can be initiated.

    Have you spoken to your Rheumy or GP about your concerns? I think maybe that would be the best thing to do as you will most likely have varying responses to your question depending on how a member feels about MTX & their own experience. The best advice I can give is not to search the internet as discussions about any strong drugs you'll find have so many varying answers you'll give yourself a headache & maybe not reach an informed decision that's best for you either way. The pain is as bad as having RD sometimes so really think you need to seek professional advice to help you in reaching a decision to take a drug that your Rheumy considers would be the best option for you at this time.

    Hope you make the best decision for you & your RD.

  • Heels and Hats have given you thorough answers, so all to add really is also to think about a quality of life now versus vague probabilities of what may or may not happen in the future. MTX gave me my life back, allowed me to live a reasonably normal life again, and hopefully has stopped me dying prematurely from heart and lung complications from the disease. So that's the important bit for me. All sorts of things may happen in the future so I just try to deal with one thing at a time. It's a hard decision, but take your time. And remember you can stop taking it anytime you like.

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