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PMR. Prednisone, Methotrexate.

Posted , 8 users are following.

kathy67492
kathy67492

cannot find information about patients with PMR, taking prednisone, and any experience with Methotrexate in terms of reducing the need for a higher dose of prednisone. I don't think there have been many studies...so patient experience is the best information available, as far as I can tell. Has anyone had success with the Methotrexate? Thank you.

0 likes, 13 replies

13 Replies

  • linda06830
    linda06830 kathy67492

    Posted

    I took methotrexate and I had severe stomach issues.  He wanted me to try the injectable type and I refused after how sick  I got from taking the pills.  It has never been proven that it helps to reduce your prednisone.  I would question taking it.

     

    • kathy67492
      kathy67492 linda06830

      Posted

      Thank you Linda...I have read volumes regarding the side-effects of the methotrexate but wanted to hear from people who have actually tried it. My rheumatologist really wants me to try it. He has patients that have had spinal collapses from being on the prednisone so long. I have not found research to verify that information, but I think I will give it a try...and hope to stop it quickly if it makes me sick. Appreciate your sharing.
  • Dave-California
    Dave-California kathy67492

    Posted

    Hi Kathy,

    I just responded to another member a few hours ago about the same methotrexate issue - here is what I sent:

    Dave-California to bob14677 • about 9 hours ago

    Hi Bob

    I have been busy with PMR for almost 3 years and I believe that from 2½ years of taking Methotrexate (MTX), it has helped to reduce the activity of my immune system which typically is overactive in PMR conditions. Also my C - reactive protein and Erythrocyte Sedimentation Rate have dropped significantly – actually below the normal levels and have maintained these low levels for 2 years.

    Before I commenced MTX, I was having large flares that seemed to reduce with MTX taken (weekly) at the same time as my daily prednisone dose, I have had less flare and much less intensity of the flares that did occur. I think that these DMARDs seem to ‘dampen’ down the underlying disease process rather than simply treating symptoms. I remember that it takes a while (1-3 months) before the MTX seemed to become active.

    I don’t seem to have had any side effects – however, I distinctively notice more fatigue and a bit more pain as the end of the MTX week arrived and improvements in these issues after taking my weekly MTX dose.

    I think that MTX has definitely assisted me in maintaining my Pred taper with less pain and I’m currently at 4mg Pred.

    After 2½ years of MTX, I am currently in the process of reducing MTX, also on a very slow increment and keeping prednisone at 4mg without any reduction while I’m doing thisMTX reduction. My rheumatologist recommended that I start the slow MTX reduction following success with my very slow prednisone taper program (thanks Eileen!!) but not until I am happy with prednisone at consistent 4mg dose.

    I think MTX reaction differs with each person but in my opinion it seems to be worth a try.

    Dave

    I hope this is some assistance

     

    • kathy67492
      kathy67492 Dave-California

      Posted

      Well, a perfect response to encourage me to give it a try. I have had PMR for 2-1/2 years, with a few flares...recovering now at 8-1/2m. I have tolerated the prednisone pretty well, and because of that I am worried about side-effects from the methotrexate. I am really interested in your comments about being able to reduce the prednisone down to 4m and also start reducing the methotrexate....it sounds "do-able". Guess I will pick up my prescription tomorrow...thank you!

    • mirella60121
      mirella60121 Dave-California

      Posted

      Hi dave

      Interesting listening to your experience. Can i ask you how many mg of prednislone were you taking when u stated methaxatrate and how many mg of methaxatrate did they start u on. Just curious

    • Dave-California
      Dave-California mirella60121

      Posted

      Hi Mirella,

      I was attacked by PMR in Jan 2014 and rheumatologist commenced with 20mg pred dose. Like most rheumatologists who have not listened to "our Eileen" and the "slow" taper - she rushed me down to 12.5 mg in two months - big flare - she put me back to 15 mg - and again a rapid taper and another 'huge' flare a month later - she put me up to 20 mg pred. She then felt that I should be on MTX and I started in June 2014. The initial dose was 25 mg once per week. The MTX took about 2 months to activate, but it did seemed start having a definate improvement despite her continuing with the rapid prednisone taper to 10 mg that they seem to insist on doing. 

      As things seemed to be better I stayed with her MTX dose and her pred taper until I self educated myselt by joining 'Patient' and listening to the "Slow" taper procedure presented by Eileen.

      I then decided to take over the Prednisone taper and dose change by myself based on my personal feelings of aches and pain - also staying on the MTX dose - and I told my rheumatologist that that is what I intended to do and she actually agreed !!

      So I stayed at 25 mg MTX until January of this year when I had tapered to 4 mg of prednisone and felt quite stable at that level of dose - and now I am on a slow MTX taper - down to 10mg per week currently - and maintaining my 4 mg prednisone daily dose.

      Well - we'll see what happens with the the slow MTX taper down to 2.5 to 5 mg range when it considered not necessary to take it any more as it doesn't provide any activity. If all is well, and there is no reaction to the lack of MTX, I will them to try a 0.5 mg pred taper and maintain that for several months before dropping another 0.5 mg pred.

      Who knows, I might get into the PMR remission (as PMR is not cureable) level and not have to take pred any more.

      Hope the same goes for you too.

      Best - Dave

  • mikeschine
    mikeschine kathy67492

    Posted

    Hi. I got it only twice. 15mg and got severe kidney pain. I have pmr with aortitis. However eular guideline recommend it. I am now on 10 mg leflunomid ( arava). Also only  ssmall trial with 23 patients but those who were refractory to prednison.  I ve been taking it only a week so far

    best regards 

    mikeschines

  • Nefret
    Nefret kathy67492

    Posted

    I took MTX for two years, and yes, it let me get the Pred dose down..........down far enough to let an enormous GCA flare through.  I was not a happy bunny. 40mg of Pred again just hadn't been in the plan.

    Once recovered enough from that to take notice (of anything) it became apparent that it was just not helping anything and it was now giving me hideous mouth ulcers.  I rather rushed the taper and stopped it with relief.

    • kathy67492
      kathy67492 Nefret

      Posted

      How low did you get the prednisone? Did your doctor think the low dose of prednisone allowed the GCA in? Yikes!
  • FlipDover_Aust
    FlipDover_Aust kathy67492

    Posted

    I've been on MTX since December last year - it allowed me to reduce from 20mg of pred to currently 7.5mg. Ive had no real side effects, other than feeling a bit 'off' the day or two (usually day two) after my weekly dose.

  • BillyP
    BillyP kathy67492

    Posted

    I put a reply about PMR some where here  but have now lost it............

    I tried MTX a couple of times but gave it away because of sickness in the tummy,

    tried half a dozen other things that i have forgotten the names of..........same 

    problem. I have had PMR for about 14 years.......i dont think you can get off pred

    till PMR is ready to leave you.....i have been reducing pred by a quarter mg

    per month for a couple of years...now at 4mg doses.....afraid its a long haul.

    To answer your question......for me no success...

    .............Billy.............

    • BillyP
      BillyP

      Posted

      One thing i forgot to mention was, i am taking Fozamax for Ostio

      and any bone density tests i have had are all good.....

      This is great because Pred usage can effect bone density........so

      i am told the Fozzo is good for me............

      ......................Billy......................

    • Anhaga
      Anhaga BillyP

      Posted

      On the other hand if your bone density is good you should not be taking any OP meds.  They can only be given for a few years and therefore should be saved for when needed, if ever.
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