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Methotrexate or not?

Posted , 9 users are following.

anne28129
anne28129

I really need some positive comments about the use on mxt! It’s being used extensively so there must be some positive stories!! 

0 likes, 15 replies

15 Replies

  • r.d.s26296
    r.d.s26296 anne28129

    Posted

    Methotrexate is a drug that is used for many treatments, including Rheumatoid Arthritis and for some cancer patients. 

    I was recommended by by rheumatologist to take it to help  me reduced quickly the prednisone ( which I stated 6 months ago at 

    25mg). 

    Whilst I was trying to reduce I suffered a lot of pains and I had to go back to starting again. 

    I read a lot about methotrexate and decided it had much worse side effects than prednisone...

    In fact I read Eileen's experience with it and decided not to take it, especially together with the prednisone. 

    I'm now reducing prednisone very, very slowly, and touch wood so far so good. 

    I'm sure a few others will give you their opinion too, so don't make a rash decision..

    Good luck. 👍

  • pam7653
    pam7653 anne28129

    Posted

    I was put on methotrexate to taper down my prednisone after 4 years. I do hear it works for some, but for me I have a sensitive stomach, likely from prednisone use and it gave me gastritis after the 4th dose. So I’m off of it. 
  • EileenH
    EileenH anne28129

    Posted

    mtx is NOT "used extensively" for PMR and GCA. It IS used extensively for rheumatoid arthritis - but PMR and GCA are not arthritides, they are vasculitides.

    https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

    and look at Recommendation 7. That is for PMR which is fundamentally the same disease as GCA. I can't give you the latest GCA recommendations as they haven't been published yet. But I do know they have said it is best used early, within the first month. Even Prof Dasgupta, acknowledged as a leading UK expert in GCA doesn't use it for everyone,

    If you go over to the HealthUnlocked PMRGCAuk forum and post your experiences and what the rheumy is saying you can do in terms of reduction I'm sure you will get more responses than here. Some may be positive. 

    However - if I were you I would be looking for a second opinion. Where are you? Is private an option?

    • anne28129
      anne28129 EileenH

      Posted

      I’m seeing my GP tomorrow so I’ll have a good chat with her! 
  • margaret22251
    margaret22251 anne28129

    Posted

    Hi I am on mtx 20mg for RA, and I was never told it would help me to reduce steroids.

    i have been on a year now, but just lately I am having my doubts as I have started with nodules on my lungs, and I know mtx can cause problems with yr lungs, waiting to see a lung specialist. 

    Only you you can decide to use it or not, but I do believe it's not used in my case to reduce pred.

    • anne28129
      anne28129 margaret22251

      Posted

      Have you had side effects from the mxt?

      Because I’m back up to 30mg steroids I’m not sleeping, sweating, dizzy and feeling lousy! I think I’ll try the mxt and see how it goes! At least I’ll be able to taper the steroids down!

    • margaret22251
      margaret22251 anne28129

      Posted

      i might be wrong, but MXT is not for tapering off pred i am sure Eileen can tell you more information. I would not take it for that alone, 
    • anne28129
      anne28129 margaret22251

      Posted

      The mxt isn’t to get me off steroids but to help with my GCA and PMR. Because of a recent flare I have had to go up from 7 to 30mg of steroids. My Rheumatologist has said I will be able to taper at a rate if 5mg a week until I get to 10mg . The side effects I get from the steroids are not good so hopefully the mxt will alleviate some of these! I’m in a real muddle as to what to do! 

      I’ve read so many comments about mxt both good and bad! Just as I did when first put on steroids! 

    • margaret22251
      margaret22251 anne28129

      Posted

      Hi Anne. I did not know mtx could help with pmr.

      i think to reduce 5 mg a week is a lot. My rheumatologist wanted me to reduce by 2.5 mg a week, but from past experiences  I use the dsns method. 

      When I first started with pmr four years ago I did not know anything about pmr nor did my doctor and she did not help to find any information . I saw another doctor who put me onto this site and boy have I learned a lot.

      i go armed with info to my doctors now, and I taper what I feel my body needs.

      i had a flare when I tried to taper by 2.5 mg went to see my doctor and told her I was reducing my way, and she said she would have into the rheumatologist I said that's fine by me.

      its so confusing when we don't get help from doctors as they don't seem to have time, but my money's on Eileen every time for information on pmr.

      have a good pain free day, best wishes😀

    • anne28129
      anne28129 margaret22251

      Posted

      I feel my doctor has been very supportive and the rheumatologist is great! When I visit him he spends at least 40 minutes with me and you never feel rushed! He knows I don’t like being on the steroids so he feels mxt is the next move! 

      As Eileen says, try it and see! 

    • margaret22251
      margaret22251 anne28129

      Posted

      Hi Anne,  yes I agree if we don't try somethings we will never know, I know of a lady who would not use pred as she was worried her pmr got really bad, hey presto she tried it guess what , like us all she said I should have tried it earlier we at least get some quality of life with it.

    • Anhaga
      Anhaga anne28129

      Posted

      Mtx does help some people.  You may be one of the lucky ones and it may help you.  Unless you try you will never know,  Good luck!
    • Mrs_Hobbles
      Mrs_Hobbles anne28129

      Posted

      I think a reduction of 5mgs per week is ALOT!! It's one thing if you 'only' have PMR, but GCA is so much more dangerous and messing around with it is not to be recommended! Unpleasant and all as the effects of steroids are, at least we know with certainty that a large enough dose, over a long enough period of time will deal with it. I feel your rhumy is being a bit glib only giving you 30mgs for a flare, it's not going to deal with the inflamation and all the while you have the symptoms, headache and jaw pain, you are in danger of some or all of the awful outcomes of GCA! None of us really want to be on pred, but it is the only know drug to deal with PMR and GCA effectively. I think while you're messing around with Mxt, will it work, won't it work, can I reduce, can I not reduce, you're putting yourself in danger, that you would be clear of, with a few weeks of a high dose of pred! You need to talk to you're GP seriously and not just from the point of view that you don't like being on steroids, from the point of view of what's going to effectively deal with the GCA! I'm sorry if I'm scaring you, I really don't mean to, but you need to know what you're dealing with, with GCA!

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