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Does the back and forth ever end :-(

Posted , 7 users are following.

rocketman42
rocketman42

Diagnosed in April 2016 and started on 15mg. Excellent results within 24 hours. Tapered to 12.5, then 10 and was doing well on 10 for quite some time. If I tried to go below 10mg symptoms would return so I stuck with 10mg for almost a year.

Several months ago I had some radiation treatment and the 10mg was no longer doing the trick so I slowly kept increasing it. Now back to 15mg and it is no longer as effective as it was when I first started. Feel stiff and achy again and the extreme fatigue is making me miserable.

I am reluctant to go above 15mg since the thought of having to be at a higher dose then when I started over a year ago is a major set back to me psychologically. I figured by now I would have reduced my dosage and be well into the process of losing the weight I gained.

Am I being foolish not to try doses above 15mg or should I try to stick with it and hope that it eventually works as it did in the past ?

Thanks in advance.

0 likes, 36 replies

36 Replies

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  • Kdemers
    Kdemers rocketman42

    Posted

    It can be a ride up and down. I wish you luck but you might need to face that the journey can be long with many challenges.and changes;listen to your body

     

    • cb72360
      cb72360 Kdemers

      Posted

      Thank you. I'm finding out just how challenging it is...unfortunately!

    • EileenH
      EileenH cb72360

      Posted

      It is the start that is worst - eventually you get the hang of it all, take the pills and get on with living. Honestly!!!
    • EileenH
      EileenH cb72360

      Posted

      This isn't aimed at any one person in particular, just this seems a good place to put it in the conversation.

      I often say to new contributors to the group that in a year they will look back and see how far they have come. Everyone does - even if they are still at a relatively high dose of pred. There are/have been members of the forum who were in a total panic when they arrived and who have become the people who provide the calm and measured responses you read here now. 

      It is all too easy to make things worse by over-analysing every ache and pain. By definition we are none of us young - PMR rarely strikes before 50. Think back to what your parents were like at 50 with or without PMR - and you are probably in no worse a state than they were. You have a new normal now. It is hard to accept I know but accept it you must unless you want up to several years of misery. If you were like BillyP, Nefret or me you would have the prospect of a very long time fighting it.

      Google the gorilla in the house by batsgirl. Learn to accommodate the PMR and work around it and you will find things run far more smoothly.

    • Michdonn
      Michdonn EileenH

      Posted

      You are a very wise LADY, wish I had joined this forum a year ago.

      Thanks!

  • BillyP
    BillyP rocketman42

    Posted

    After being on pred for PMR for about 15 years or so ,i am slowly srarting to work it out,because everyone is effected in diffrent ways.at the most, we can all generalise about the situation...for the first few years it is extremely difficult to come to terms with doses ..possible side effects etc..This can indeed be extremely frustrating and worrying ,particually as a lot of Doctors appear to 

    know very little about PMR,

    If you have pain or a flare up ,there is little point in raising doses slowly,a big hit

    is required to get things under controll....reducing slowly is the go,,some thing YOU have to experiment with to see how you go...

    I was all over the place for the first few years....terrible i can assure you...........

    i am now on 5 mg daily    to get to that, i was dropping one quartet mg

    per month , some times longer..depending on how i felt.....

    Even now i can have a bad time...so i double my dose to 10mg daily for three

    or four days (no longer) then straight back to 5mg daily.  FOR ME,this is now how i handle the situation.(but it has taken a long time to arrive at this point)...

    I feel as long as the pred dose is not too high for too long a period the side effects are better than the pain etc......FOR ME ..i do not like MTX etc etc...

    I suppose this is not too much comfort for you at the moment but believe me

    there is no quick fix available so a bit of experimenting and talking to every 

    body for any info they have is the go...

    Best of luck.............

    • rocketman42
      rocketman42 BillyP

      Posted

      Thanks for sharing.....After starting at 15 mg one year ago and slowly tapering to10mg I had a flare due to some other medical issues I am dealing with.

      As per the suggestions I have received, this morning I increased my dose to 20mg. Keeping my fingers crossed that I notice an improvement.

      My question is if I experience an improvement of symptoms on 20mg should I stay on the 20 for a prolonged time or should I stay on it for 2-3 days and then reduce to 19 for 2-3 days and so on until I am back to 15mg?

    • BillyP
      BillyP rocketman42

      Posted

      Good question..........i wish i could tell you exactly..........

      to try it  , i would stay on the 20 for four days then drop back to your 10 

      dose and see how it goes........if the 20 did the job and dropping back to 10 made it crop up again.....i would then go back to 20 for another 4 days and taper it back as you suggested....please bear in mind that

      i am no expert ...just saying what might suit me ,hopefully ,may 

      suit you.....to clear up the flare you may have to go to a higher burst

      to settle it down,  here is where it is trial and error unfortunately........

      But be guided by your rheumy of course..............

    • EileenH
      EileenH rocketman42

      Posted

      As Billy says - stick at the 20mg until you are as better as you think you will be, preferably though just a few days and then reduce slowly, 1mg at a time and see how you get on.
    • Michdonn
      Michdonn rocketman42

      Posted

      scotth42, a year ago I started at 20 mg, was at 7 mg had a flare up

      the doctor tried little increase till I was at 20 mg and could not walk

      hit it hard, come back down very slowly. Your body will tell you, I will

      reduce my Prednisone if I am hurting, I don't care what the doctor

      says. Next flare back to 20 mg if I am in the single numbers.

      That is my 2 cents worth. Good Luck, hang in there.

    • EileenH
      EileenH Michdonn

      Posted

      "I will reduce my Prednisone if I am hurting"

      surely you mean

      "I will NOT reduce my Prednisone if I am hurting"

    • rocketman42
      rocketman42 Michdonn

      Posted

      Seems like it's unanimous as to how to approach this. Called my rheumy and she agrees.

      I took 20mg this morning and now feeling a bit racy. Hopefully it will also improve my symptoms in a day or two and then I'll make adjustments from there.

    • Michdonn
      Michdonn rocketman42

      Posted

      Very slowly, after a year of this I now believe jump up crawl back!
  • Michdonn
    Michdonn rocketman42

    Posted

    Scott42, SORRY I WILL NOT REDUCE MY PREDNISONE IF I AM HURTING!!!

    Glad reread what I wrote!

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