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So confused

Posted , 9 users are following.

deb88821
deb88821

Was diagnosed 3 years ago with pmr, then undiagnosed as I did not have scientific proof, long story short finally off prednisone but my crp levels are high 1 week and normal the next. So confused as to what is happening , I'm in so much pain but afraid to go back on without a definite diagnosis. Has anyone else experienced this and what advise can anyone give me. Would be so grateful for anything you can offer.

Hurting and confused.

0 likes, 28 replies

28 Replies

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  • Daniel1143
    Daniel1143 deb88821

    Posted

    Not sure what they mean by "scientific proof" as there is no scientific proof.  If what they mean is confirmation of elevated blood levels (CRP and Sed Rate), you should know that there are many of us - myself included - who have PMR and have never had elevated blood levels.  Your Rheumy should know that, though many don't seem to believe it.

    As for your fear of prednisone, it is a magic pill for those of us who have suffered from PMR.  If it works for you, there is no reason to suffer one day longer.  I am not the one to advise you on how much to take.  Generally, people start at 15-20mg.  Some might suggest you go back to the last level that worked for you and give it a try.

  • daniel08939
    daniel08939 deb88821

    Posted

    deb88821,

      I support Daniel 1143 100%. I am on my second case of pmr and neither time was there any scientific proof that I had pmr. Both times my blood markers were normal and still are. The one thing that seems to confirm pmr is it responds to prednisone.

    There is a feeling on this site that prednisone is a awful drug. Prednisone is what is allowing me to play golf, go to the gym, sleep at night. Before prednisone I could barely move.

  • deb88821
    deb88821

    Posted

    That is how I was first diagnosed, the response to predisone was dramatic, I felt like a kid on Christmas morning.

    Unfortunately other dr. We're displeased to say 5he least and insisted after 2 years that there was nothing wrong with me and I must get off immediately. 3 days away from being being steroid free and now they tell me to go back on with no valid evidence, don't want a repeat of the past.Deb

    • daniel08939
      daniel08939 deb88821

      Posted

      deb88821,

             What amount of prednisone are you taking and how did you get down to that dose.?

    • deb88821
      deb88821 daniel08939

      Posted

      Now on 1/2mg took over a year, started at 15 got down to 10mg. And started having pain but markers were normal so it was ignored. We found my markers are only higher in the afternoon and this realization is casting all kinds of confusion and doubt with everyone.Deb
    • Anhaga
      Anhaga deb88821

      Posted

      As the markers are not an indication one way or the other that you have PMR I don't know why variation throughout the day would add further confusion.  Markers indicate inflammation is present.  Low markers, however, apparently don't necessarily mean inflammation is not present.  Moreover your inflammation should have been controlled while you were on pred, so having low markers only shows pred is doing what it's supposed to!

    • daniel08939
      daniel08939 deb88821

      Posted

      My rheumatologist told me that the body produces 1 mg prednisone a day. I truly believe that markers can be misleading and the one truth is if your symptoms are gone you are taking enough prednisone. If you have symptoms you need to take more.
    • deb88821
      deb88821 daniel08939

      Posted

      Thanks for your input Daniel it truly is appreciated.

      The bottom line is I'm totally dependant on the doctors to treat me and no matter what I say it is only there opinion that matters. They hold the key to be enjoying life . Thanks to everyone who joined in and shared your experience and your wisdom, it's comforting knowing I'm not alone with this terrible affliction.

      With great graditude, Deb

    • deb88821
      deb88821 Anhaga

      Posted

      Great question and will answer with upmost honesty sure sure. If I took a copy in im sure I would be told to see one of there doctors if I'm not happy there. As far a taking a friend or advocate with me I did that. At the following appointment they laughed and said they had bets as to whether or not my daughter would be with me.I feel like I have been humiliated, embarrassed and bullied. Rheumatologist are far and few around here and to be honest I don't know how much of this I can take. I don't mean to sound dramatic or be a downer but this has been my life for the past 3 years and as I'm in my 60s I just don't have a lot of fight left in me.

      Thanks for your suggestions and concerns, Deb

    • Anhaga
      Anhaga deb88821

      Posted

      Oh that is simply not acceptable.  How can these people behave like that when their business is suppposed to be caring for people. I'm not quite clear - are you being looked after by a gp or a rheumatologist?  

       

    • Anhaga
      Anhaga

      Posted

      Ok, just scrolled downd.  It seems the rheumatolgists in your neck of the woods are all cut from the same cloth.  Can you go back to your gp for care?
    • deb88821
      deb88821 Anhaga

      Posted

      No not an option, what the rheumatologist says goes.
  • jeannae68307
    jeannae68307 deb88821

    Posted

    Deb,

    i had all the symptoms for three years with no elevations in crp or esr.  Then, suddenly, the pain got worse, the markers showed in my labs, and I agreed to go on prednisone.  Although I hate the steroids due to,side effects it has given me a quality of life I don't have without them.  I am now trying to get used to new steroid and will start adjusting down hopefully getting this to go back into remission.  My markers change dramatically too.  I wish you the best.

  • sharon35553
    sharon35553 deb88821

    Posted

    Hi Deb,

    I have been in same boat, Dr said not PMR because blood levels normal but after weeks of severe pain I started on 20 mil of pred and within one day I was reborn, literally pain free. Before the pred I couldnt walk, groin pain so bad I was not able to get out of bed. Have been to three Rhuematologists who all wanted me off the pred but I insisted no.

    I have had no luck with Drs and they are all against the pred.

    I am now on 5mil and while I am not half as pain free as on the 20mil  I am trying so hard to stay here for a while. I found that 10 mil was better but my Dr is refusing to give me any more pred so now I am going to see my Primary internist and hope he will help me.

    There is no definite diagnosis as the others here have stated and I agree, if you respond to the pred then so be it and get to the dose where you are comfortable. Good luck!

    Sharon

    • deb88821
      deb88821 sharon35553

      Posted

      Sharon, I'm so sorry for what you have had to go through and pay your future will be less complicated. Once you get the taste of life without pain it's devestating to have to go back to that life.The pain is unear able at times and there are nights when I can only ask God to have mercy and bring me home. Sometimes I wish I had never experienced life on prednisone then I wouldn't know how much better my life could be.

      I think I need to look around and see those who are really ailing, maybe then I can count my blessings.

      Wishing only the best, Deb

    • sharon35553
      sharon35553 deb88821

      Posted

      Deb thank you so much and you are so right, once we get that feeling of no pain we want it forever but we really must go on and be strong. Im now getting very bad pain in my right thumb, started out of nowhere and Rhuemy said its osteoarthritis ans nothing to do with PMR and I dont believe him, I told him my shoulders and groin starting to ache again so it must be a flare and again he shrugs me off, making me feel as though Im crazy but a few months ago I upoed the pred to 10 mil and like magic pain gone. Now back down to the 5 and I dread a flare starting or maybe its that my body is trying to get back to normal since the dose is so low but not sure.

      I truly sympathize with you and wish you the best.

      Sharon

    • ricky23486
      ricky23486 deb88821

      Posted

      I think you would benefit from finding a physician/rheumatatologist who is experienced in pmr and who is able to spend time on your case and evaluate your treatment programme.  Your unremitting pain is unnecessary and unacceptable and has to be dealt with intelligently.
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