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PMR, Prednisone, Tapering

Posted , 9 users are following.

kathy67492
kathy67492

i am 2+ years into PMR, taking 7-1/2m daily. I am "comfortable" pretty much with this dose as long as I do not over do it...or try to taper to 7m. A year ago I had tapered to 7m but had a rough go of it...ended up having a flare...back up to 10...tapered down to where I am now. Next month my rheumy will want to "try something else" even tho I told him I would not take the Methotrexate. So I don't really know what he will want to try in order to get me off the prednisone. Obviously I need the 7-1/2m to function. Do I hold my ground on that? I am now 11 weeks+ and stable at 7-1/2...don't want to mess with that! Any advice on what to tell my rheumy?

0 likes, 14 replies

14 Replies

  • Handbrake
    Handbrake kathy67492

    Posted

    Hi Kathy, sounds like you know what you feel comfortable at so just tell your Rheumy exactly what you've told us and stay there until you feel ready to drop down to 7.
  • FlipDover_Aust
    FlipDover_Aust kathy67492

    Posted

    hi Kathy

    I was having trouble reducing my dose too and I decided that I would try the methotrexate with the understanding that if it didn't work, or the side effects were too bad I could stop taking it. That was nearly 5 months ago and I feel fabulous, no side effects and my dose has dropped from 20mg to 6 1/2 and still reducing. I really can't encourage you enough to try - my PMR has almost completely 'disappeared' after really struggling and being disabled to the point I thought I'd have to give up work and have a walking frame.

    I realise it's not for everyone, but you won't know how you feel unless you try it.

    • kathy67492
      kathy67492 FlipDover_Aust

      Posted

      Appreciate the encouragement...maybe I will give it a try at the end of May.  It is so helpful to have this forum. Picking your poison is a difficult thing and, for the most part, I have not found anyone on this forum this far that has had anything good to say about methotrexate. Thank you!
  • MaggiGrace
    MaggiGrace kathy67492

    Posted

    I too was fearful of methotrexate side effects and refused it.  My rheumy wasn't happy.  

    A few weeks later she suggested I try Plaquenil. 400 mg daily, as it is also a steroid sparing agent.   After about 2 weeks I felt improvement (even though rheumy says not so - it takes 6 months to be effective).   Well feel better regardless. 

    I developed horrid ringing in my ears as a side effect.  Rheumy downed my Plaquenil dose by 1/2 to 200mg daily and I'm hanging in there.  I have reduced fairly easily from 5mg down to (fingers crossed) 3.5mg pred using the added Plaquenil.   I still have good days/bad days, but the bad days are much lighter.  

    Hope me that info is helpful.  

    • kathy67492
      kathy67492 MaggiGrace

      Posted

      thank you...don't know if you are in the USA...but will put Plaque il on my list of possible medications to try and get down on the prednisone!
  • iellen32
    iellen32 kathy67492

    Posted

    I would like so much to send to you a helpful reply.

    I take Pred since the onset of my GCA and because following the advice of my rheumy and tapering the steroid too fast - 1MG /month I had a flare and now I take Pred 21MG to feel good - the same happens to you . From this point I intend to go slowly tapering and I know it will take suits sometime.

    My doc never asked me to try a different medication- some people feel good some don't doing so.

    I understand your concern and i would feel the same.

    Wish you choose the right road for you.

    I will follow this discussion,

    Stay safe, dear Kathy🌺

    • kathy67492
      kathy67492 iellen32

      Posted

      I agree...why change horses mid-stream when the medication is working? I feel good on the 7-1/2, relatively speaking. I have learned the hard way about reducing too fast...so follow Eileen's slow method. What I have not learned is that doing too much can have the same effect as tapering too fast. Hopefully I have caught this flare and will be more conscious of my activity level. Thanks!
    • Sheilamac_Fife
      Sheilamac_Fife kathy67492

      Posted

      I don't understand the rush to try some other drug with potentially horrendous side effects. It seems to me you haven't been so long on steroids. Did you say 2 years and down to 7.5mg? That's similar to me. I think that's ok. It's not a huge dose now and if when you try to taper, the symptoms come back then there must still be active inflammation. So why not let the Prednisolone do its work. Have a few weeks and test it again. Maybe even slower than before ie less than 0.5mg. I was down to 5.75mg average, but have slipped up to 6mg again while I'm moving house. Huge amount of work and stress. It's your body Kathy! You know it best. X
    • Sheilamac_Fife
      Sheilamac_Fife kathy67492

      Posted

      its not even it's not even changing horses... You have to take both of them!...
  • iellen32
    iellen32 kathy67492

    Posted

    Like you I have been on Pred since the onset of my GCA- I see you have PMR and understand your concern as you was offered the opportunity to change the medication - many people does not get a good result, some do have.

    If you are feeling that Pred is working for you I would not make any change just to avoid taking Pref- it is not our enemy...

    Hope you will do the right thing for you. There will be for sure more replies and you will know to make up your mind.

    Wish all will work in your favor🌺

    Keep safe.

  • Daniel1143
    Daniel1143 kathy67492

    Posted

    Kathy, much like you I tapered to 7.5mg, then struggled to get lower. Managed my way to 5 with frequent flaring and finally gave up.  Took a few shots at 10, the. Settled back to 7.5. Will wait until the end of April and try to reduce again. 

    Like you, my rheumatologist recommended methotrexate and I went on it four about four months.  The public literature is unclear whether it works at any level for PMR, and I am pleased to note that we have one person on this thread for whom it did work. Did nothing for me,and as I read more and more about side effects, I realized I did not want to be on two challenging medications.  So I stopped the methotrexate.

    Lets remember that none of these drugs cure PMR.  Our PMR has a mind of its own and hopefully will ease up and disappear in time. It decides.  We do not.  So I think you have to decide whether reducing prednisone as an objective is important enough to complicate your body with another medication. In the end, I decided no, but that was purely my choice.

    • FlipDover_Aust
      FlipDover_Aust Daniel1143

      Posted

      I absolutely agree that we have to remember that the drugs don't 'cure' PMR/GCA... my Rheumy says that the MXT is a 'steriod sparer'  which means you need less pred to keep the symptoms at bay.... and he tells me that it will 'hold it' once I'm off pred - let me say here and now I have grave doubts about this even though I hope he's right! lol

      Given I couldn't get below 20mg and was feeling so awful the MXT has been a godsend. I feel well again and I'm just plain grateful!

  • tina-uk_cwall
    tina-uk_cwall kathy67492

    Posted

    Kathy, I think to be down to 7.5 after 2 years is good going. So why the rush? It is also a good suggestion to try a further reduction at the end of May. I had a flare when attempting a reduction from 9-8 and Once I had the flare under control I was scared to attempt to reduce again. But I adopted a version of the dead slow and almost stop reduction and things went fine. Remember the next time you reduce it will be a year on from the first time and your level of inflamation may have reduced.

    i only ever reduce by .5 and once I have finished the reducing regime I stay on the new dose for a good 6 weeks. 

    But, don't let your rheumy bully you. If he does suggest another drug suggest that if after your next reduction attempt if things go wrong then you may consider it but things are working well currently and personally there's no,point to rock the boat. Regards, tina

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