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

Unsure if PMR and rally scared!!

Posted , 11 users are following.

Canadian1957
Canadian1957

Folks,

I would really, REALLY appreciate your insight and guidance as I’m scared.  They think I may have PMR although the tests are quite inconclusive other than to show an elevated autoimmune marker.      But I have / had the classic symptoms such as overnight onset of severe shoulder, leg and hand pain; weight loss and extreme fatigue.    Interestingly 90% of the joint pain symptoms have disappeared but I do definitely have the weight loss and extreme fatigue.  I will start Prednisone as a bit of a trial to see if that helps…..and if it does help, it’ll help narrow the diagnosis.   (The sedimentation rate (ESR) and C-reactive protein (CRP) figures are normal….or pretty darn close to it apparently.)

So my question is, is it possible to have the weight loss and extreme fatigue without the use of medications even after the joint pain has virtually disappeared??

Any input would be hugely appreciated.     Thanks.  

0 likes, 29 replies

29 Replies

Prev
  • EileenH
    EileenH Canadian1957

    Posted

    90% of joint pain gone? Joint pain isn't that common with PMR but sometimes it does feel like that. 

    There are no conclusive tests unfortunately - even when ESR and CRP are raised that only shows there is inflammation SOMEWHERE, it isn't necessarily due to PMR.  Weight loss and fatigue are common symptoms of many autoimmune disorders as well as other illnesses.

    I don't quite get your question though: "is it possible to have the weight loss and extreme fatigue without the use of medications"

    • Canadian1957
      Canadian1957 EileenH

      Posted

      Eileen,

      I guess what I meant was although the pain went away without medications, I'm still exhausted and have weight loss. Will the pred. help this?    Thanks.    

    • EileenH
      EileenH Canadian1957

      Posted

      As I said - if you aren't careful the pred will sort the weight loss very well! Most of us struggle with weight gain with pred and if that DOES happen to you cutting carbs is a good way to manage the appetite and craving for food. The weight loss is msot likely due to the inflammation in the body but I cant really say much about it as I gained weight with unmanaged PMR - 5 years of not being able to exercise let the pounds pile on. 

      The fatigue is something else - autoimmune disorders in general are accompanied by fatigue. It isn't entirely clear why, except there is a permanent state of "illness" similar to flu in your body and that goes on despite the pred, it has no effect on that for most people except at higher doses some people get a boost of energy from the pred - some people can even become quite wired like the Duracell Energizer Bunny! Mostly the fatigue has to be managed by pacing and resting appropriately. This post 

      https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

      has a couple of useful links - the second is particularly good. 

      Also google "The spoons theory by Chrsitina Miseriand" and "Gorilla in the house by batsgirl" - both lighthearted (but serious) articles about managing chronic illness

    • Canadian1957
      Canadian1957 EileenH

      Posted

      Thanks very much Eileen.   I will read the articles.   I just hope this fatique goes away.....I'm exhausted.  

    • Canadian1957
      Canadian1957 daniel08939

      Posted

      Thanks Daniel.   The fatique is unreal......so if the Pred resoves it, so be it.   
  • Nefret
    Nefret Canadian1957

    Posted

    I have never had raised inflammation markers, mine remain stubbornly at the lower end of 'normal'.  And that is in 16 years of this little problem.  And before anyone runs away crying that they're going to be on steroids for 16 years let me say that I am VERY atypical and now have more than one reason for being on steroids.  Which anyone else is totally unlikely to develop.

    So yes, I believe and always have done, that symptoms prevail over any numbers.  However, where the pain hits most is very individual, with me it was my legs and lower back with hips and shoulders joining in at a later date.  I've never had any joint involvement either, my pain has always been muscular (that is until OA put in an appearance, which is neither here nor there).

    So if tomorrow's experiment with steroids works out whichever way round, you will either be feeling much, much better, or you will be able to cross one more condition off the list of 'might be's'.

    • nervebyte
      nervebyte Nefret

      Posted

      Nefret, how long have you been on steroids and at what dosage are you on now?

       

    • Nefret
      Nefret nervebyte

      Posted

      16 years on steroids in varying doses.  Currently on 6mg.
  • amkoffee
    amkoffee Canadian1957

    Posted

    I went to my doctor because I had pain and when he did my blood work my C-reactive protein and sed rate were both elevated so when he called me 2 days later to tell me I had PMR I told him my pain was gone. But he did not believe that that meant my PMR was gone he said that I was just lucky because I was going to have to wait to see my rheumatologist. Come to find out he was right it took 2 months to get in to see a rheumatologist and of course the pain returned during that time. I know your blood work did not show that you had PMR but I would not be at all surprised if your pain returned. The only thing is that the prednisone is not likely to do much for your fatigue it normally only treats the pain and inflammation that is caused by the PMR.
    • daniel08939
      daniel08939 amkoffee

      Posted

      One of my symptoms of pmr is fatique and the pred does help.
    • Canadian1957
      Canadian1957 daniel08939

      Posted

      Thanks Daniel!!!    I need all the encouragment (and strength) I can get!!
  • jean50664
    jean50664 Canadian1957

    Posted

    I lost 7 kilos, I think mainly due to the fact that my inability to have a normal day ...as in ... getting up showering... walking ... have lunch etc.

    My hands were hot and I couldn't believe the pain and my ability to walk up and down stairs... the pain in both my hands... I was on morphine patches... Monel... Tramadol... panadiene forte. Etc

    3 months later after starting on 15 mg of Pred .. I am down to 9 and have no symptoms ... slowly tapering at 1 mg per month... good luck smile

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.