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polymyalgia rheumatica

Posted , 7 users are following.

david60752
david60752

I was diagnosed with PMR over 7 years ago. I went thru many tests, the classic sed rate test has always been normal. My rhematologist finally tried prednisone at 20 mg and it did not touch the symptoms so I tried 20 twice a day and it worked great. It took only a couple of months to get me down to 25 mg, still one half in am and one half in pm. It took me over 3 years to get off prednisone. A little over 2 yrs ago the symptoms returned, mine has also always included numbness and tingling in the hands and arms. I am presently on 5mg in am and 2 mg pm. To my knowledge I have no sypmtoms or side effects from the prednisone. I have had a bone density scan and it was alright, although I have shrunk from 5'10" to 5'8". I just wanted to join this forum as I have never been able to talk to anyone with this problem. Also at present pred levels I still have some symptoms, 10 mg would solve the problem, but I would like to get off the meds permanently. Thank you for any input.

2 likes, 17 replies

17 Replies

  • tina-uk_cwall
    tina-uk_cwall david60752

    Posted

    Hello david, what bad luck the PMR returning, this condition really has a mind of its own! If it's any help I shrunk by 1 cm about 2 years ago, long before I was diagnosed and I was only 52 then. I do think that many people shrink abit at some point through middle age. I am not medically qualified so have no brilliant tips for you other than we all want to get off prednisone, but whether we like it or not I'm afraid it's slowly, slowly catchy monkey when it comes to tapering. Never forget that the medication has to fit the inflamation and not the other way round, and there is definitely no point being on prednisone, and possibly suffering some side effects and still be in pain, because that way you're suffering the side effects without benefitting from the pain reduction, so don't reduce too quickly. One thing you will witness from this site is that we all advocate the slow reduction method, as there's less chance of repeat flares. Hopefully Eileen will answer you soon and give you the link to the slow taper method.

    anyway, after all that, welcome. Christina

     

    • david60752
      david60752 tina-uk_cwall

      Posted

      Thank you. I have read about the taper method you have all been trying. Should I go Back to 10 and start from there. Also do any of you have tingling numbness and burning sensations in your hands and arms. I am basically trying to manage this problem by myself. I don't have great insurance so I can't keep going to specialists. My gp lets me manage the pred on my own.
    • EileenH
      EileenH david60752

      Posted

      Have you got all these links:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      which will provide you - and your GP if he is interested - with a lot of info about PMR and GCA in general. Some is a bit medical, lots isn't. The slow reduction is in posts further down the thread. Have you tried taking the pred all in one dose in the early morning again? Taking it all in one has a bigger anti-inflammatory effect but I do get that some people find the relief from the stiffness and pain doesn't last the full 24 hours and mornings are bad. 

      I suspect the burning and tingling in your hands could be either carpal tunnel syndrome or ulnar nerve compression - you tell from which fingers are affected. The pred can cause fluid retention and that in turn can cause pressure on the nerves. It could also be neuropathy from something else but that is something to discuss with your GP maybe.

      If 1mg more makes things better then it is worth it. 1mg is neither here nor there in terms of side effects - but if it provides better management it is a good thing. Side effects without benefits is pointless.

    • david60752
      david60752 EileenH

      Posted

      Thank you for your input. I have been working on taking less at nite. I actually take 5 in am and 2 in pm, it helps me sleep. The tingling and numbness did go away during the two years I was off prednisone. Whatever is wrong with me it all travels together. It may sound strange, but it seems that when I am trying to reduce I can actually feel a sensation that I liken to pain in the background waiting to manifest itself.
    • EileenH
      EileenH david60752

      Posted

      I get what I can only describe as sensations of electric shocks travelling through parts of my body - closely followed by a feeling of warmth. It is a bizarre disease!!!!!

      No - that doesn't sound strange - if you are very close to the minimum dose I think I'd expect to feel somehting trying to elbow its way in.

    • Padada
      Padada EileenH

      Posted

      Eileen,  Here I am again.  David's question and the answers have me really wondering about my dose of prednisone.  I am still not sure about my dose of 15 mg (for 2 weeks now) because it does NOT relieve all of my pain.  I don't know how to determine if it has relieved enough pain to be an effective dose. 

      I think I am asking if you can still have pain when on sufficient prednisone, or should almost all pain be gone?  I believe 70% pain relief is stated in some reports as successful pain relief? 

      It seems to me that almost everyone here on this forum has almost complete pain relief when started on enough prednisone.  Since I have such trouble adjusting to the prednisone, I would hesitate to go higher.  My rheumatologist has not suggested higher dose, but then most of the docs I have seen would rather not give me prednisone at all. 

      For some reason, I have not been able to take the prednisone and say, oh I feel so much better. 

      Sorry to be such a bother with this dosage issue, I do seem to be a below average student in the pmr classroom.  Would it be a fair trial to increase the prednisone by 5 mg and see if the pain went away that day - and could one go back down to 15 mg the next day without a taper?  

      I do have to take another pain pill for the pain and it helps - so perhaps this isn't pmr!  Still figuring it out after two different rheumatologists and PCP aren't sure! Is it any wonder that I am not sure either?   It is a good thing that many on this site have had different experiences and are willing to share so freely. Thank you for your patience...  

       

    • EileenH
      EileenH Padada

      Posted

      No Padada - most of us aren't entirely pain-free for some considerable time - it very much depends what is causing the pain. If it is muscular it should improve faster than if it is bursitis or synovitis/tendonitis, for example. 

      What everyone with the PMR we are talking about on this forum experiences is a marked improvement with pred but for me it took 6 months for the bursitis to go. You could try 20mg for a couple of days and see if it makes much difference and you could return to 15mg immediately if it didn't yes. But there are people who are never pain-free - they are just considerably better than without taking pred at all.

      Be sure though that you aren't overdoing it on the good days. And as you say - there could be other things going on, depending on what the pain is. But none of us can say if that is a possibilty, not knowing what you still have and what improves with pain-killers.

  • EileenH
    EileenH david60752

    Posted

    Talk away David - we'll always listen! It is also nice to have another man - because you are few and far between. 

    We'd all like to get off the pred permanently - but if what we have is PMR then that will only happen when the underlying autoimmune disorder has burnt out and gone into remission - as has happened for you once by the sound of things.

    I do feel a bit concerned that you needed so much to achieve a response - because there are other forms of autoimmune inflammatory arthritis that resemble PMR in terms of early symptoms and which would respond to 40mg too whereas simple classical PMR will respond to a much lower dose. 

    However - assuming it is PMR, you need what you need to manage the symptoms. It is a balance of what you can accept in terms of dose and symptoms. if you are lucky it will burn out again.

    • david60752
      david60752 EileenH

      Posted

      Let me back up to the start of this problem. Before I knew what was wrong I called it Tin Man Disease, I felt like the Tin Man in the wizard of oz and was much in need of some human wd40. I could hardly move, came on quite suddenly and everyone was baffled. I live in Maine in the US and have never met anyone having this problem or understanding it including Dr.s.. My diagnosis was based on the fact that prednisone did the trick. I stumbled onto this site while researching the issue and today is my first day. I am also not to computer savy, but I must say it is great meeting everyone thru this site.
    • EileenH
      EileenH david60752

      Posted

      Yes - sounds very suspiciously like PMR! Concrete legs, Tin Man - yup! Especially if pred sent you back to "normal", whatever that is...
  • tina-uk_cwall
    tina-uk_cwall david60752

    Posted

    David, if I was still having great pain at 7 mgs then I definately would be tempted to go up a notch, whether it be 8, 9 or 10 mgs. Hang on in there and hopefully Eileen will answer soon re that query. I do not suffer from any tingling or numbness and again I'm not sure if that could be anther less well known symtom of PMR or perhaps another problem that you have alongside PMR. If your Dr allows you to manage your own symtoms then definately follow the slow tapering method. On Monday I attempt to reduce from 10 to 9 following a flare up at 8. The first time round I jumped straight from 9 to 8. This time I'm doing a month or possibly 6 weeks of 10 one day 9 the next, then a month or 6 weeks of 9 then begin the tapering method again but from 9 to 8. I'm keeping my fingers crossed. Christina 
    • david60752
      david60752 tina-uk_cwall

      Posted

      Good luck! I did hear from Eileen and received the links. Its just so good to be able to discuss this issue with all of you.
  • denis49351
    denis49351 david60752

    Posted

    david60572, I have been battling this disease now for 5 years, just when I feel good it seems to come roaring back.  i was down to 5mg prednisone/day and was doing fine, my Dr. reduced me to 2.5 then zero, I was o.k for 1.5 years then in the middle of a trip my wife and I were taking it came back, I simply went to bed and the next morning i had pain in my hips, and the large muscles in my legs.  By the time we arrived back home I could barely get out of bed, walk, lift a cup of coffee, so back to the Dr. My C reactive protein and sed rate were through the roof and I was now back on the prednisone, he thought this was to be temporary but 1.5 years later every attempt to decrease the prednisone has resulted in more pain.  The latest boughts (therehave been many) a decrease in prednisone results in a day or two of comfort, but any type of exercise results in an inflamation of a joint (hip, shoulder, elbow, knee) that starts out as a mild irritant in the morning but becomes increasingly painful during the day even if I do nothing other than sit there a return to the last dosage amount of prednisone results in relief usually within 24 hours.  One particularly unsettling time involved my left foot after i had walked an unusualy long walk for me (about 6 miles) I went to bed but during the night had to get up and could put no weight on the affected foot, i had to get a set of crutches just to see the Dr. (who was convinced it was gout)  but when I re-upped my prednisone by 5 mg the pain went away the next day, I phoned him and he couldn't believe it until my uric acid came back normal (no gout)   I am perplexed as to when (if ever) i can get off the prednisone, my first three years on it I had no complications but now they are starting to pile up.  The only thing I can say is I can put up with that much better than the pain.  The problem seems to surround very little knowledge of the disease in the medical community, it's a disease that sits under the radar and very little research has been done.  Three years ago I was told that it would never return after I was off the prednisone, that was wrong.  I have had other autoimmune diseases (colitis in particular) si I wonder if there is a connection.  

    • EileenH
      EileenH denis49351

      Posted

      I would wonder if what you have is PMR at all - joint involvement like that is very unusual. Bursitis in shoulder and hips is not unusual but more targeted steroid treatment in the form of injections is better than raising the oral dose. 

      It could be palindromic rheumatism or even late onset RA or even something I haven't even thought of. But it isn't uncommon for other things to initially present looking like PMR and about 1 in 6 patients told at first they have PMR have the diagnosis changed at some later point.

    • denis49351
      denis49351 EileenH

      Posted

      I am not sure whom you were responding to but I did not allude to an episode of bursitis in either my hips or shoulders.  I assume it involved the muscles and connective tissues, as well as nerve endings in those general areas.  By definition PMR affects mostly the large muscles initally around the shoulders but can affect other areas as well.  It is interesting to note that a true bursitis does not respond well to oral steroids because of the lack of blood vessels in the bursa sac.  Yet mine responds very well usually within 12 hours and within 24 hours I am usually pain free. That would indicate the muscles around the hip and not bursitis is the problem. During these episodes my C-reactive Protein and ESR are generally extremely abnormal, yet after 3-5 days of a 5-10 mg increase in my prednisone  they  return to normal, my Dr. then has me titrate down until both start to rise and then leaves me there for a few weeks and attempts to decrease until they rise again.  The lowest I have been able to attain is 5 mg daily.  This is my second go around with this thing so I think I have the symptoms nailed.   I can refer you to the Mayo Clinic website for more information, inculding giant cell aritis which seem somehow to be related.

      I have now been erferred to 3 RA specialistsin 9 years and my ANA's and other tests remain normal, I am now with one for the past year and a half and his opinion is PMR, if there was hope for some form of another treatable disease i would be all for it.

    • EileenH
      EileenH denis49351

      Posted

      I was replying to you yes - and you talked of hip pain that worsen with any exercise. Bursitis in the hips and shoulders is typical of PMR. I doubt you can refer me to any sources I haven't already read repeatedly in the last 8 years and I am very aware of the physiology and anatomy of PMR.

      It is the short lived flares I am referring to - which as you described them do not sound typical of PMR but would be very typical of PR. Obviously I misunderstood your description.

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