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Officially PMR

Posted , 9 users are following.

carol20979
carol20979

 I went to the rheumy today he confirmed PMR. He said to reduce my pred 1mg per month .I am currently at 10mg

2 likes, 25 replies

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  • patpom
    patpom carol20979

    Posted

    Hi Carol,  sorry that you have PMR. It's an exhausting disease.  However, it can be dealt with.   Your physician's plan is, as others have mentioned, very agressive.   I was diagnosed 18 months ago. I started out at 20mg and got down to 15mg pretty quicky.    After that I went down 2.5 mg per month until 10mg.  After that I had fits and starts.   Do NOT try to get off of prednisone too quickly.  It will backfire big time--it's one step forward, six steps back as you have to go up much higher than your last dose to get rid of the flare.  I kept trying to wean too fast and I was always sorry I did.   I finally successfully got all the way down to 2mg in less than a year, but the drop from 2mg to 1.5mg threw me into the worst flare ever and I had to go back up to 6mg  and start over again.   I then dropped in 0.5 mg increments over the next eight months until I successfully was taking 1mg/day.  Then I went to 1mg every other day and then to 0.5 mg every other day.  After 18 months, as of this week,  I'm off of prednisone and both my sedimentation rate and CRP are at low normal levels.   I can't imagine anyone can get over PMR (and off prednisone) any sooner than that, and from what I have heard in this forum even 18 months is really fast to wean off prednisone.  I'm not celebrating--I'm going to wait a few weeks to make sure this recovery is for real.  You will do yourself no favors by rushing your treatment.  Take a deep breath and do not let your physician push you to wean faster than feels right—and your body will let you know.         
    • carol20979
      carol20979 patpom

      Posted

      Congrats hope all goes well foryou.Yes I do agree that his planis to aggressive i plan to take a slower approach,
  • nickb-55
    nickb-55 carol20979

    Posted

    I'd concur with Patpom - I didn't get clear advice from the doctor and thought I could reduce 1mg per month but when I got to 5mg I was getting the symptoms again and had to go back to 7mg. It's helpful to hear how you've done it Patpom - no one explained the process to me! I'll start to reduce by 0.5 every 6 weeks and see how it goes.
    • EileenH
      EileenH nickb-55

      Posted

      There are so many posts about reducing on this forum I can't believe you haven't seen at least one of them!!!!!

      Doctors don't know you can't reduce like that - it is how you reduce pred doses in other illnesses but PMR is due to an underlying chronic autoimmune illness that isn't touched in any way by the pred - it is used to manage the symptoms, not sure anything. Many many patients have gone down, and up, and down and... When they try the slow reductions we suggest they manage to get to lower doses with fewer problems. Some doctors are beginning to get the idea as we tell every patient we come across about the idea.

      Oregonjohn already posted this link - here it is again to be sure you see it:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      There are all sorts of links in the first post and in the replies the description of a very slow reduction programme that has worked for many people and is also approved of and even used by specialist rheumatologists. Until I used it I got stuck at 9mg. Now I'm down to 4mg. 3mg is too low - get aches again. 

    • carol20979
      carol20979 EileenH

      Posted

      Well I have seen them I was just relaying my  Docs advice never said  I was going to take it
    • patpom
      patpom carol20979

      Posted

      Carol, you will do fine.  This form is a great place to talk.  I figured out my dosages just listening to my body, and I assure you that your body will let you know.  It became easier when I stopped being mad at the prednisone and decided it was my partner.   I had a few times where I went down too fast, but I'm actually not sorry I did--it taught me things about the PMR and made me more aware of my body reactions and the effect of the prenisone.   I'm a master's prepared RN and I knew NOTHING about this malady  (I don't like calling it a "disease" : ) before I ended up with it.  My doctor is a Rheumatologist at Mass General Hospital--and even with all this,  I had moments of confusion and frustration.   I knew no more than you do about PMR.  However, I did fine and now I'm off prednisone after 18 months.   I'm still feeling great and am relieved.  You will do fine as well. You may get of more quickly or it may take a while more.  Again, see the prednisone as your partner, not your nemisis,  and everything works better wink     Stay connected to this forum.  It is a great community and I have learned a lot.  
    • EileenH
      EileenH patpom

      Posted

      " It became easier when I stopped being mad at the prednisone and decided it was my partner."

      Absolutely! No point wasting energy fighting something that can't be changed. Use the energy to work around it!

    • Oregonjohn-UK
      Oregonjohn-UK nickb-55

      Posted

      Copy of post from another thread:

      This is not a daily reduction but a reduction over a few weeks using the 1 day new, 6 days old, 2 days new 5 days old etc. method

      When you get to 10 mg and have to consider the max 10% rule this chart might help:  (note 0.5 = half a 5 mg tab)

      Total mg      5 mg     1 mg

                     equals    equals

      9            1              4

      8.5         1 + 0.5     1

      8            1              3

      7.5         1 + 0.5     0

      7            1              2

      6.5         0.5           4

      6            1              1

      5.5         0.5           3

      5            1              0

      4.5         0.5           2

      4            0              4

      3.5         0.5           1

      3            0              3

      2.5         0.5           0

      2            0              2

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