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POLYMYALGIA AND RELAPSES

Posted , 10 users are following.

marg44743
marg44743

I was diagnosed with PMR Dec 2015 with devastating symptoms however, I was treated promptly. Each time I reduce to less than 5mg of prednisone, I relapse.  The pain and stiffness targeted my R knee, and then the L knee, which left me unable to move that limb. I  immediately took a loading dose of prednisone 25mg for three days, then 12.5mg for three days, then 6mg, then very slowly decreased. I used a very slow method that I came across online over 45 days. I am now on 4mg for week or more, and am experiencing inner knee pain (intermittent), and bilateral leg aches.

i don’t know if this is PMR related or that there is something else going on.

Can anyone shed any light on these symptoms.

i have read many patient forums, and many experience varied symptoms.

i am keen to hear and share some stories.

0 likes, 20 replies

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  • Michdonn
    Michdonn marg44743

    Posted

    Marg, I always trying to figure out is my pain from something I done PMR pain or something else. Currently in the midst of a flare started with piriformis syndrome and blossom into full blown flare. So now I have two problems. Up the Pred and go for a massage. We have to learn to listen to our bodies. I have tendency to over do it and hurt myself, which I did. You have to think about what you have done, sometimes it is something very simple that you have not done for awhile or just more of something you normal do. Each time I over do it I have to figure it out sometime I get both, like now. But I will get over it and start reducing my dosage, I will not reduce if I have any PMR pain, but every time so far I have been able to get PMR pain free. Figure it out and act accordingly, think positive and try to smile. ☺️ You can do it!
    • marg44743
      marg44743 Michdonn

      Posted

      Hi Michdonn

      I take on board what you are saying.  All in all I have been well until such times as I decide....” I need to get down to a lower dose”. I am learning though, and the forums have been an immense help with building hope. I realise I have to have more patience.

      Cheers 

      Marg

  • peggy_56092
    peggy_56092 marg44743

    Posted

    A few months before my Jan 2016 PMR diagnosis, I was unable to completely fold my knees.  It felt like cement wedges were preventing it.  My 15 mg dose of pred solved that.  I later had one knee replaced because of prior damage from a fall but the other knee, after a couple of drains and a couple of steroid shots, is working well so far.  I had no knee problems, except for the one fallen on, until PMR.  Sounds as though you need more pred.
  • dan38655
    dan38655 marg44743

    Posted

    I think that your dosage requirement is very typical of a lot of us.  I ended up right at 5mg (based on my 140lb weight) for a couple of years and now at about 3mg after a full 5.5 years since onset of pmr.

    I learned not to hold back on the pred when symptoms worsen, so I now seasonally adjust in real time, as needed, between 2mg and 3.75mg which is my current dose.  I am doing well and staying active year-round, but just have to adjust my dosage in real time whenever symptoms worsen. Cutting back on dosage can only be tolerable to a certain degree, and subject to change. I try to get up and out of the house as early as possible, before my energy wanes, and this does a lot of good.

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