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Starting Methotroxate

Posted , 8 users are following.

pam7653
pam7653

I've had PMR for 5 years and treated it for 3 years with Pqrednisone. Started at 15 mg and decreased to 0 the first year. Of course it came back so back up to 15 and this time I stayed at 5 mg. this past fall I had a flare. I was put on a steroid pack for a week and then stayed at 7.5mg until this past Jan byword surgeries after my flare this fall kept me at 7.5. Last week I felt another flare coming. My Rhumy wants me to start Methotrexate this week. He will see me again in June, unless I have issues.

I've read of the side effects. What info can this group give me on what to expect? I want off these steroids!

0 likes, 35 replies

35 Replies

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  • Susanne_M_UK
    Susanne_M_UK pam7653

    Posted

    Pam, I started MTX in January of this year. I have GCA, and before that, PMR for 4 years, so have been on pred for a very long time. Whilst having GCA, I have been unable to taper below 20mg pred and have had several flares, taking me back up to 40mg, and the side effects of pred are now having a really bad effect on my body.

    I've always been reluctant to start MTX, because of the potential side effects, but decided I needed to try it to see if they will help me taper the pred. You also cannot drink any alcohol at all, so a real lifestyle change for me!

    So far, so good, no side effects, but it's early days. Of course, your immune system is even more compromised, so I'm having to be even more careful to try to avoid other people's bugs.

    Before I started MTX, I had a chest xray to make sure my lungs were ok and I also had bloodtests every two weeks. The bloodtests have just been reduced to every 4 weeks.

    It's essential you are monitored regularly and your rheumy should know that.

    • EileenH
      EileenH Susanne_M_UK

      Posted

      The attitude to alcohol seems to depend on the rheumatologist! There was a long disussion on a blog called RAwarrior - a very good place by the way to get info about the various drugs used in RA.
    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      My liver is already affected by the pred, so alcohol is definitely out for me.
    • FlipDover_Aust
      FlipDover_Aust Susanne_M_UK

      Posted

      definitely out for me too Susanne! Lawd I miss it! lol

      MTX is working brilliantly for me atm.... as I posted in another discussion yesterday....

  • Anhaga
    Anhaga pam7653

    Posted

    I wonder what we were all saying that caused most of the posts to be deleted.  
    • EileenH
      EileenH Anhaga

      Posted

      The subject was something that belongs in a different forum - alternative therapies. These forums are very strictly moderated.
  • FlipDover_Aust
    FlipDover_Aust pam7653

    Posted

    I' ve had NO side effects from MXT - I've started taking it in Dec and I've been able to drop my pred dose from 20mg to 8mg since then.

    You SHOULD have a liver test done - as a measure from which to tell if the MXT is doing any damage.

    And you MUST take folic acid in the day/s following your metho dose.

    • EileenH
      EileenH FlipDover_Aust

      Posted

      Did the Sydney (?) rheumy decide it might be LORA rather than "just" PMR then? I can't remember if you gave a progress report - having just claimed my memory is back to normal...
    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      Hi Eileen, definitely not LORA, he thinks it fibromyalgia as well as PMR. I gave a report back last week - I waited until I had something to report rather than a blow by blow description. Lol. I have to say I was disappointed you didn't give me your two cents worth lol
    • EileenH
      EileenH FlipDover_Aust

      Posted

      MTX doesn't do anything for fibromyalgia and often not for PMR, that's why I asked.  I just wondered why it had worked so well for you but I'm really pleased it has.

      My 2 cents worth about what? If MTX works it is great - and you were struggling. I don't like it when they want to stick it in the mix when a patient is reducing well on their own or tell the patient it will get them off pred altogether but when someone gets stuck - why not try it for a while and see what happens?

    • EileenH
      EileenH

      Posted

      Or did you mean about the diet? It is similar to what I eat - except I couldn't cope with the really extreme exclusions. If it's working - that's all that matters, providing you are being careful about any nutrients that may be missing from your diet as a result.
    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      The MTX is to get mthe pred dose down and nothing else. And it's working. Down to 8mg already. I couldn't get below 16mg previously.

      I completely agree that there is no reason to try MXT if you are able to reduce pred - or it's working effectivly. I often read on here that rheumys want people to take it when they are already on low doses of pred. rediculous.

      I'm taking Lyrica for the suspected fibro - there's definitely something else other than 'just' PMR although I'm not convinced it's fibro either!

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