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Does this ever end?

Posted , 12 users are following.

Achenpain1
Achenpain1

 Has anyone managed to get off of the prednesone completely? 

0 likes, 16 replies

16 Replies

  • marilyn79703
    marilyn79703 Achenpain1

    Posted

    I was on pred and methotrexate for 15 months. Have been off pred now for 8 months. Still on methotrexate but lowering dose every 3 months. Feel great so far but always on guard. The rhumy will not say it will not come back so I go month by month. 50 percent chance I will get polymyalgia again they say. But I am being positive and refuse to get it.
  • ptolemy
    ptolemy Achenpain1

    Posted

    My sister's godmother got PMR when she was 68. She had it for eight years. She is now 95 and is as fit as anything.
  • Achenpain1
    Achenpain1

    Posted

    I am not firmiliar with methotrexate I will look it up. 
  • diana21296
    diana21296 Achenpain1

    Posted

    I have 2 friends, both men, one was off it 4 years ago within 22 months and the other in 24 months, also 4 years ago.  PMR seems to treat men more kindly than women as they don't have our hormones to contend with!  My neighbour got off it for a while and then had to go back to a low dose.  She has been off it now since Dec and feels fine.  So it is possible - we live in hope!
  • constance.de
    constance.de Achenpain1

    Posted

    We all live in hope!.  Many, many do!  Some are off pred within 2 years (mostly men), others  take between 3-6 years or even longer.

    How long have you been on pred so far?

  • Achenpain1
    Achenpain1

    Posted

    I have been on pred for 7 months so am learning a lot from this site. I hadn't even heard of pmr before I was diagnosed. It's always good to see a light at the end of the tunnel.
    • diana21296
      diana21296 Achenpain1

      Posted

      Me too. I have had it since end of Dec.  Never know how I will feel from day to day!

       

  • Daniel1143
    Daniel1143 Achenpain1

    Posted

    Was on methotrexate for four months.  Did zero for me.  Not sure anyone else has had positive results taking methotrexate. Literature is iffy on whether it helps or not, and the side effects are scary. Be sure to read up before you consider taking it.  Once I did, I got off it immediately.
    • FlipDover_Aust
      FlipDover_Aust Daniel1143

      Posted

      I started on MXT in Dec and have managed to cut my pred dose from 20mg to 7mg in four months. And I feel fantastic. no side effects that I'm aware of. So it does work for some people. I was very resistant but do not regret taking it yet.
    • Daniel1143
      Daniel1143 FlipDover_Aust

      Posted

      I believe part of the rationale for MT is to get off prednisone. Question I would ask is give the side effects of MT are you any better off? That was my ultimate concern.  In the end, I was taking two drugs vs one. 
    • EileenH
      EileenH Daniel1143

      Posted

      I know a few people who have done well on MTX. I also know a few who were able to reduce their dose at first but then had a massive flare and were back where they started. One developed GCA and is sure it was the MTX that "let it in".

      Often PMR diagnoses are revised to RA at come later point - MTX will probably work very well in patients who have been mistakenly diagnosed as having PMR but it is really early LORA (late onset RA). Anyone who really struggles to reduce their pred dose or who didn't have the very dramatic response to pred originally might be advised to try MTX. You can always stop taking it again if it makes you unwell or if it doesn't work. If it doesn't make you feel bad and seems to allow a reduction in the pred dose - what is to complain about? Flip is an example of that, as are the other couple of ladies I mentioned.

      The most recent international guidelines on managing PMR suggest using it but ONLY as an approach that has been discussed and agreed with the patient. But it shouldn't be forced on anyone and it doesn't REPLACE pred in PMR - but then, how certain is any diagnosis of disorders which have no 100% accurate marker?

    • FlipDover_Aust
      FlipDover_Aust Daniel1143

      Posted

      My view is that if it helps me reduce my pred dose and makes me feel better, then yes, I'll take it.  I'm not knocking back a drug that works for me. I have my life back and I'm extrememly grateful.  

      Like I said, I have no noticible side effects from taking MXT but I have plenty from taking pred - including the beginning of cataracts - and I'm only 52! I've also put on a significant amount of weight, lost muscle tone, skin and hair thinning and who knows what it's doing to my insides!

  • EileenH
    EileenH Achenpain1

    Posted

    If you go to the "front page" of the forum and scroll down the threads list you will find one with stories from people who have recovered. There also stories like that n the northeast of England PMRGCAUK support site - there's a link in the "resources" thread. Sorry - I usually copy and paste it but the site is playing up for me today and I'd lose this thread...

    About 25% of people get off pred in up to 2 years but are at a higher risk of a relapse later. About half get off pred in up to 4 to 6 years and the rest need longer, sometimes being on a low dose of pred for life but that also includes people who develop adrenal insufficiency - which may be due to the PMR or it may be due to the pred.

  • Lee-Colorado
    Lee-Colorado Achenpain1

    Posted

    I am currently at .5mg and it has taken a year to get here from 10mg. I have reduced .25mg a week since I reached the 10mg level. I knew my adrenal gland had fully kicked in at about 3mg when I no longer had any highly noticeable side affects from tapering. I was stuck at 3mg almost two months due to travel commitments and a severe cold while in Wales. During my reduction period I have had to use a 5mg, 2.5mg and 1mg mix. I also have my CRP checked before starting the next step. Since 1mg I have planned two .5mg steps. I know that I could have just dropped in one step but I will stick to a slow taper.

    I have GCA and started this journey in Nov., 2013.

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