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

Don`t know weather to laugh or cry!

Posted , 6 users are following.

linda17563
linda17563

Have been in lots of pain in last few weeks, had steroid injection for quick relief, no help at all.  Doctor wrote to hospital to my Rheumaologist....I have had fibro for the last 20 years, so with PMR as well, not been easy. ( Now I`m down to 10.5mg).. Didn`t hear from hospital for appointment, instead they sent "suggestions to my doctor, who has just rung me!

Firstly, and most importantly, the rheumie said, I must get off the steroids ASP.! without DMARDS...take painkillers, possibly tramadol (which I can`t tolerate or any actually because of fibro!)  blood tests to look at inflammation....(2 months ago it was 10)

Feeling a bit scare about coming off steroids, so told my doctor it will be a VERY slow method!....

I

Have tried Bowen therapy, but don`t feel well enough to resume at the moment....

 I would welcome any suggestions, thank you.....

Meant to say, have had PMR for the last 4 years.....

0 likes, 33 replies

33 Replies

Prev
  • jeanne333
    jeanne333 linda17563

    Posted

    Saying a prayer for you .. I'm sure someone on this forum will be able to offer some advice .. as you are really caught between a rock and a hard place ..
  • ptolemy
    ptolemy linda17563

    Posted

    I cannot believe it, pred is the only thing to alleviate the PMR pain. Tramadol is a total waste of time for PMR, although it may be OK for fibro. The steroid injection may not have worked because it was not given in quite the right place. An orthopaedic surgeon friend of mine reckons you can just be a couple of millimetres out and it is useless. When I was first diagnosed with PMR I had loads of blood tests including RA, which seems sensible. 
    • linda17563
      linda17563 ptolemy

      Posted

      I think my rheumie has come to the conclusion that it must  be fibro, because the steroid injection didn`t really help me....so told my doctor to offer me painkillers!  Like the above posts says, I am caught between a rock and a hard place!   Makes me feel quite low, because I feel I`m not going to be listened to or treated properly...Thanks for your reply...
    • ptolemy
      ptolemy linda17563

      Posted

      I know how you feel, the trouble is one doesn't know how to fight the powers that be.
  • FlipDover_Aust
    FlipDover_Aust linda17563

    Posted

    What arrogance! Fancy advising 'treatment' without having seen you....simply not good enough.

    Does pred actually reduce your pain? At what dose did the pain get worse? Is 10.5mg enough for you at the moment? If you've had PMR for 4 years you know how this all works - and so does your GP obviously. Getting off pred is not the goal - getting to the lowest dose possible is!

    • linda17563
      linda17563 FlipDover_Aust

      Posted

      Yes, arrogance is an understatement...I could never come to an agreement on treatment with her, it was always on her terms....my sister had her at first with RA, but has now changed to someone else, like me, she got quite stressed just at thought of the appointment!

      I am stiff in mornings, but it eases a bit by lunchtime...very tired, I then take second dose with evening meal....I don`t leave the house much, and rarely drive....don`t think 10.5mg is enough, but what can I now do!  Whenever I drop, I get awful flares....

      It seems to me, there are some rheumies that are hell bent on getting us off a drug they put us on in the first place....regardless!   Maybe they know something we don`t...

      How are you now that you have stopped MTHX, ok I hope?

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.