1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Returning PMR symptoms

Posted , 10 users are following.

Handbrake
Handbrake

Posted on behalf of dorothy89764  • about 16 hours ago 

Hi There

I was diagnosed with PMR 3 years and 3mths ago.started on 20mg and over the 3 years reduced pred down to 1mg. Took some juggling. I stayed on 1 mg for appox 1 mth without pain. 16 weeks ago I took my last  tablet (maybe). All was good for a few weeks but the mild to not mild muscle soreness has returned. I take Ibuprofen in the mornings and at night so I can sleep. The ibuprofen manages the pain, but it is still there just under the surface.  Can this still be withdrawal from the pred? The soreness I experience is not as bad as when I was first diagnosed. 

1 like, 18 replies

18 Replies

Prev
  • JanSP
    JanSP Handbrake

    Posted

    My SED runs from 2 to 4 when I'm not having a flare. My original SED when I started GCA was 86 seven years ago. I developed PMR  about 5 years ago. Now I'm at 12.5mg. pred, MTX and Actemra. I get labs and see my rhuemy each month. With 4 GCA flares (1 PMR) and now the addition of the Actemra I'm not sure how slowly to reduce now. One of my flares came at 1 mg pred and the others after I was off everything for a few months. I don't know how  docs can know when we are over this. 
    • Anhaga
      Anhaga JanSP

      Posted

      Right at the beginning my GP told me that many patients keep a supply of 1 mg tablets on hand to deal with any stirrings of the disease.  That seems eminently sensible to me - like keeping a tube of otc hydrocortisone ointment on hand for the occasional skin rash, and as the years go by you need it less and less, but its use when necessary fends off a full-blown flare-up and the need for further intervention.
    • Handbrake
      Handbrake Anhaga

      Posted

      Sensible advice Jean, there is still so much we don't know about this condition... but at least we can share personal experience and see patterns developing until further research is done.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.