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

New to PMR and confused

Posted , 7 users are following.

mary36969
mary36969

I was diagnosised with PMR four months ago and was put on steroids which tamed down the symptoms within the typical 48-72 hours. I'm  slowly trying to go down in the doseage. Labs are now normal but I still have symptoms, not even close to as bad as prior to medication but still there. Do any of you still have mild symptoms with normal labs, is that possible? 

The reason I am confused is that I had symptoms for several months before they ramped up to the point I was  in terrible pain and had trouble getting out of bed or out of a chair etc, the normal symptoms most seem to report. At my worst and only until then did my labs register as high and only then was the diagnosis made. My doctor is telling me that if I am having pain with normal labs then it must be the osteoarthritis and not the PMR. My simple question is, do any of you have breakthrough mild to moderate symptoms needingOTC pain medication while still pulling normal labs? 

2 likes, 10 replies

10 Replies

  • EileenH
    EileenH mary36969

    Posted

    The labs are only an indicator - you had pain before with normal labs, the labs are normal now because you are on pred. I was immobile with PMR, my labs were normal, not even just normal but exceptionally low normal.

    Any doctor who tells you you should be totally pain-free from PMR when on pred is talking rubbish. Some people are, some are not. I am not - and I don't have osteoarthritis. I've had rheumys who tried to tell me the pain I had was osteoarthritis in the past - but there is no evidence of it now. I, and many others, don't find OTC painkillers do anything for PMR pain. And if you are on pred it is recommended you shouldn't take NSAIDs (ibuprofen, aspirin, Mobic, celebrex) at the same time, it increases the risk of stomach irritation and bleeding.

    That aside - what dose are you on now? If you reduce too fast or too far you risk pain again: either because of steroid withdrawal or because you have gone to too low a dose to control the inflammation which is causing the pain in PMR. The pred does nothing for the underlying autoimmune disorder that is the indirect cause of the symptoms you have. That continues until it eventually burns out - then it doesn't cause inflammation, you no longer need pred.

    Some people will have high labs at the start which fall as the inflammation recedes. If the inflammation then gets out of control again they may or may not rise again. It all depends, they can lag a long way behind (as you saw in the first place) but everyone is different. Most of us don't fit the textbooks!

    • mary36969
      mary36969 EileenH

      Posted

      Yes I did have pain before my levels were high but when I make that point with my rheumatologist he and his nurse tell me that if my levels are normal I shouldn't be in pain from the PMR.  I must say my doctor is wonderful, so kind and caring, not at all  one with a 'God" syndrome and he is very respected in our area.  I see him again in a two weeks and will discuss this with him more then. He makes every attempt to explain so I have no doubt he will try. It has been very helpful to get responses from all of you that indicate that you also have pain with normal levels....I though I was a really wierd exception!  Thank you. 
    • EileenH
      EileenH mary36969

      Posted

      Wonderful he may be - but he's wrong on that one! Good luck when you see him.
  • mary36969
    mary36969

    Posted

    Thank you EileenH, I am on 10 mg now. My husband has been very ill and I am his caretaker. He was in the hospital 26 days April-May and is having a slow recovery.  We are hanging in there the two of us day by day. Have you found that stress increases symptoms? I only take tylenol, or precscription pain meds. I can't tolerate any NSAIDs. 
    • EileenH
      EileenH mary36969

      Posted

      Oh definitely Mary - and normally the first thing I would say is avoid it! But that obviously doesn't work for you. In fact - as a result you probably need a bit higher dose than normal to be able to cope. I hope your doc isn't trying to get you to reduce any further for the time being.

      A top group of rheumy researchers in the UK keeps patients at 10mg for a year and find that that definitely reduces the rate of flares/relapses. The usual reduction patterns result in a flare rate of about 3 in 5, theirs takes it down to 1 in 5 - still too many but far better. 

      Now you have found us do keep in touch. All the very best to you both and "Gute Besserung" as my German-speaking Italian neighbours her inthe Dolomites would say! (Get well!!!!)

  • Mrs.Mac-Canada
    Mrs.Mac-Canada mary36969

    Posted

    Hi Mary, welcome to this wonderful forum.  My experience has been that to much stress definitely has an affect on my PER.   Just recently, after spending a week with eight grandchildren and other family I had my first nasty flare after 17 months on prednisone. The stress was from the adults not the children, lol.  I had been doing a decrease in dose from 2mg to 1mg so that may also have made a difference.

    I have learned that slow decreases till you find your symptoms are managed is the most important thing to keep in mind. Then you can VERY slowly decrease.

    You might want to try yoga or meditation for your stress. I found yoga very helpful.

  • debbie27473
    debbie27473 mary36969

    Posted

    Hi Mary

    Yes, I too still get moderate pain even when my bloods levels go down. My doctor (who has been very good) is now confused and says she can't understand why i am still in any pain. (I was diagnosed in Jan. this year and started on 15mgs of pred. Now on 12.5mgs) She has just referred me to a rheumatologist. I have tried to explain the latest research and all our experiences to her but I don't think it sinks in! Also, yes. Stress definitely makes the pain worse for a few days until you give in and rest more. Trouble is that just having pmr and being in constant pain is very stressful so avoiding it is nigh on impossible! Sorry! I'm sounding very negative. On a good note, by joining this forum you have just made loads of new friends, all of whom are truly understanding of your problems and will be there day or night to offer support and help! Its wonderful. Take care, Debbie

  • vawils
    vawils mary36969

    Posted

    yes i concur with the other responses you have gotten as to having pmr symtoms even with normal blood work. My rhematologist also suggested I shouldn't be having any symtoms which is just wrong in my case.   I certainly still have symtoms including muscle fatigue, general fatigue, muscle soreness and others some of which may be due to the prednisone.  I am also on a NSAID drug - meloxicam, that the doctor thinks i need but i am not sure it helps any and am concerned about the side effects so probably going to stop taking it to see what happens.  I had tried NSAIDs before my pmr diagnosis (and prednsione) and they did nothing to help at the that time when the pain was the worse.

    • debbie27473
      debbie27473 vawils

      Posted

      As Eileen and others will confirm, The current thinking is that we should NOT take NSAIDS with Prednisolone as it increases the risk of internal bleeding in the stomach. That's the rule here in the uk anyway. It is actually on the contraindication sheet that you get in the packet. However, I have not heard of Meloxicam, so maybe they are a special type? Good luck, Debbie
    • EileenH
      EileenH debbie27473

      Posted

      If I remember rightly the manufacturers claim is that meloxicam is less hard on the stomach - to compensate for that it is associated with some quite nasty cardiovascular side effects. And personally I wouldn't believe the gastric claims either although it seems many medics believe them.

      I wouldn't take it.

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.