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

Confused by flare up

Posted , 11 users are following.

ddelaquila
ddelaquila

I was diagnosed with PMR last October. Was on pred 30mg and decreased too fast to zero in May/Jun.  Then came a horrible...worse than the first onset, flare up.

I had just moved so no doctor nightmare.  Luckily I had some pred and started myself on 20mg...some instant relief..more with time, but upper right arm took longest.  In the meantime i saw a number of bad docs. A Rheumy who was good.  All stress to get off the pred.  So i was doing the DSNS got from 20 to 17.5 about 2 weeks ago and the right arm started again....so back to 20mg.  I got some initial relief but not the pain keep getting stronger.  Needless to say i am scared to death, i never want to go back where I was.

It just seems odd to me with the 20 mg that it hasn't stopped the pain.

I have been diagnosed with PMR and other things ruled out with docs interviews and testing.

The Rheumy is a research doc so seeing him regularly is out.

Going to a newish general doc on friday but he seems like he has no clue.

I get more info here than I have gotten anywhere!

Please advise,

Scared

(Dottie)

 

0 likes, 9 replies

9 Replies

  • faye05942
    faye05942 ddelaquila

    Posted

    Hi Dottie

    I was diagnosed with PMR in June, started with 50mg, I am now on 10mg but I have had flare ups with every decrease, I refuse to take any higher dosage. I have just seen a new specialist and he has said that I’m sensitive to the prednisone and agrees with me in not taking higher doses, he also is now treating me with methotrexate because my PMR is morphing into rheumatoid arthritis 😂 the only good thing about that is I can now decrease the prednisone and get off it..

    • Anhaga
      Anhaga faye05942

      Posted

      Methotrexate is a treatment for RA.  It does help some people with PMR reduce their dose.  But if you still have PMR mtx will not replace all the pred.  

      I'd rather have PMR than RA as PMR doesn't cause joint damage, and pred side effects can usually be well managed.  Hope things work out for you!

    • margaret22251
      margaret22251 Anhaga

      Posted

      Yes Anhaga I wish I only had pmr, but I have PMR/RA and mid foot OA I have to deal with two nasty drugs , but without pred I am sure I would be in a worse state.

       

    • Anhaga
      Anhaga faye05942

      Posted

      Just noticed you said you were started at 50 mg for your PMR.  That must have been very hard on you, no wonder you have suffered so.  It's a dose for GCA which is a medical emergency akin to a stroke, not normally for PMR.  I do hope now you are down to the 10 mg level that the side effects are diminishing.  All the best.

  • jill58546
    jill58546 ddelaquila

    Posted

    Dottie, I started with symptoms in July but did not seek any medical treatment for it until the end of July. My PC did a pres pack and while on 40 mg the pain subsided mostly. I was only on for 3 days of each and by 10 I had a awful flare up so I went back to 20’s. Then I got an appointment a week later with a rheumatoid doctor and the pc made me stop all prednisone for the week. They did not want to mess up her  diagnosis. That was the worst week I ever had. It sounds like a lot of your story. I am on 35 mg right now today was the first day of that. I hope it works. Sorry to hear you’re going through the same thing. The rheumatoid Dr. thinks I might be a rare case that has to have just a higher dose. I think it’s because I just waited too long.
  • EileenH
    EileenH ddelaquila

    Posted

    When you have pain in one localised place like that it is generally not PMR - even though it might be related to the PMR.

    Have you done anything to injure the shoulder? Is there any sign of bursitis in that shoulder? Have they ruled out narrowing of the artery supplying your arm? When I have a flare of my PMR it often starts in one bicep but it always spreads and responds to a bit more pred.

    Your muscles remain intolerant of acute exercise, the pred does nothing to change that. Even carrying a heavy shopping back or wearing a shoulder bag on that shoulder can be enough to cause trouble.

    • EileenH
      EileenH

      Posted

      Bah - shopping BAG!!!
    • jill58546
      jill58546 EileenH

      Posted

      That’s what I am finding out. Even bending gets my hips going ( like today).  Trying not to do so much is hard. I don’t want to give up doing my everyday activities. 
  • kate50809
    kate50809 ddelaquila

    Posted

    My GP has the responsibility for prescribing my pred so, the first time I saw him after my  rheumatolgy appointment I was also scared, I put together the information I had learnt from this site about tapering and what to do if you had a flair, and as tactfully as I could, I said ' this is my understanding of how PMR should be treated, can I read it to you and see if you agree?' I also explained that it was based on proper medical research, not Dr Google!!

    He said that that was how he treated PMR, admitting that he hadn't read the research but felt it was right!!

    I told him the rheumatoligst seemed keen for me to reduce the pred (I was only on 10mg) and he just said that rheumatologist often wanted to rush people off pred but he didn't know why.

    Now it is possible that my GP did agree, it is also possible in the face of such evidence he felt he had to agree!!  Do you think you could do something similar with the next GP you see?

    Good luck, I know how frightening this can be when you are so dependent on the doctor to do what you need rather than what he/she thinks best.

Back to top

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.