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PMR or Rheumatoid Arthritis?

Posted , 8 users are following.

jane0118
jane0118

Hi Eileen and everyone!

I saw the consultant rheumy on Monday and she was great. Spent a lot of time listening to my story, asking lots and questions and examining my joints - seeing what I could move and what was tender.

She is concerned that as I had a painful neck and shoulders, then hip and pelvis, then tops of the arms that I may not have PMR. She used ultra sound to scan the ligaments in my arms, and could not see anything much - just a slight collection of fluid in the left arm which is not as painful. The scan is becoming a test for PMR. 

I told her I had read the BSR journal paper on the Bristol protocol and could I please have a week's trial of pred. She agreed, BUT said she was not convinced so did some more blood tests for RA, a CCP which the GP cannot do. Plus I had X-rays of my feet and neck as she was not happy with my limited movement. 

I get the results this week. She said she did not want to treat PMR if I really had an atypical RA presentation, as pred would sort out the pain, but not prevent the joint damage so I would need the new DMARDs for RA.

I felt dramatically better after a few hours on pred- I could run up the stairs!!! On Monday night I was in such pain I thought about sleeping downstairs as I was in such pain just trying to lift my legs.

After 48 hours the pain has gone from my legs, but my right shoulder is bad so I am taking ibruprofen again. I can get out of bed easily, have no morning stiffness, can get dressed easily, I can walk up and down stairs, even pick something off the floor. The only problem is I am so fatigued I have had to go to bed by mid day. I also feeling like I am a bit spaced out. I went into the charity where I am a trustee and could not follow the meeting.

Any ideas?

1 like, 15 replies

15 Replies

  • erika59785
    erika59785 jane0118

    Posted

    Hi Jane,  I have had RA for years and was recently diagnosed with PMR which I find more painful than RA.  Your symptoms describe the pain I had to endure until I was put on a proper Prednisone regimen which started from the upper 30 and tapering down slowly.  Prednisone helped the pain in my right shoulder right away; it took longer to reduce the pain in the lower back/girdle area and left hip.

    Your doctor is taking a lot of tests which my GP did not do.  He just listened to my symptoms to make the PMR diagnosis.  

     Eileen is very knowledgeable and she will be able to guide you.

    All the best to you and hopefully relief of pain, soon.

     

  • EileenH
    EileenH jane0118

    Posted

    That response to pred sounds like PMR - and I'm surprised that she doesn't think the painful neck and shoulders followed by hip and pelvis and tops of arms isn't PMR. Becaue that was what mine was like and what a lot of other people have experienced.

    Careful with the ibuprofen - NSAIDs and pred don't make good bedfellows since both can irritate the stomach and cause bleeding on their own, both together doubles the risk. 

    The fatigue is probably the autoimmune disorder and/or pred - but I bet you are also doing far more because you feel well again! DON'T - you need rest too for now.

    • jane0118
      jane0118 EileenH

      Posted

      Hi Eileen 

      Well you are definitely right that I have been doing more! It's wonderful that I can roll over in bed without being in extreme pain and having to use my arms.

      I was given a PPI and Adcal to protect my stomach and bones to take with the pred. I just find paracetamol does not do it for me!

      I know ibroprofen can be dangerous - my father had a bleeding ulcer and ended up back in A+E 3 days after starting it. I always take it with food so have not had any tummy problems so far. 

      I think the rheumy thought that as my neck started to be painful back in July and my arms on at the end of September it was not a typical presentation, and of course I am 50 so on the young side. 

      Now waiting for results.....

    • EileenH
      EileenH jane0118

      Posted

      Rubbish - absolutely typical of a slow onset - it doesn't always hit overnight. I was 51 when mine started, just as you describe. But it couldn't be PMR because my bloods were normal, I was too young - all the usual gumpf. Young patients tend to be atypical - but we all respond to the pred in the same way if it is PMR.

      Of course you're doing more - you are trying to catch up. DON'T!!!! And still be careful - a PPI doesn't always work as one of my friends will tell you. She was told by her GP to take ibuprofen and was on a PPI - she had the same effect as your father after 3 doses, not even 3 days!

      The pred will work eventually - providing you don't overdo it. We all did - that's why I knew!

  • Oregonjohn-UK
    Oregonjohn-UK jane0118

    Posted

    I was going to say the same thing about not mixing NSAID's with Preds.  I was told to only use Paracetamol if it was other pain.
  • gayle42253
    gayle42253 jane0118

    Posted

    Hi all,

    I found this thread while searching more info on PMR after yet another 'flare up'.  I was diagnosed at age48 - which I see other's here have been younger than the '50' YO cutoff!  I am curious to know who, if any of you have been able to come off medication altogether.  Everything I've read says that the condition can go away, but it may take years.  I have had success with whole body cryotherapy, but it's hard to find here in the US, and I've had yet another flare up - and it's almost 3 years since I was first diagnosed.  So of course I wonder if maybe that was not the correct diagnosis -  the symptoms seem to mostly fit.  Though I additioally get sever pain in my knees or ankles and wrists as weel as the shoulders, neck and hips.  It can be any of those, but usually starts off in my shoulders and neck.  So I guess I would also like to know if others have experienced any of those symptoms as well - and I can still run a low grade fever with flare ups.  These reccurrences seem to be caused by stress, and sometimes excessive heat exposure.  Does any of this sound familiar to anyone else?

    Thanks for any insight you can give

    • EileenH
      EileenH gayle42253

      Posted

      There are quite a few people who have been members of the various forums (there are 3 in the UK) and who have been able to get off pred altogether - but as far as I can remember there are only two ladies who currently post on this one who have done so and they both had GCA. By definition, the support forums are for people with problems. If you are off pred you are in remission and getting on with life! There are more on "zero pred" on the PMRGCA northeast forum and some had had PMR. 

      I am now on a low dose of pred, 4mg and falling I hope, but I have had PMR for 10 years, had 5 years no pred and undiagnosed ("too young" at 51 and normal bloods)  and have had 2 major flares in the last 6 years. 

      I had knee pain early on and severe foot and hand pain - a recent study has identified that, yes, PMR can affect hands and feet. I also have problems in back and shoulders that have been diagnosed as myofascial pain syndrome which often happens alongside more traditional PMR symptoms - please can you google it rather than me writing for 10 minutes about it! It is better dealt with with local cortisone shots and manual therapies (mine has been treated using needling, again, can you google that).

      There is a good correlation between stress and PMR flares - in fact most autoimmune disorders thrive on stress. You don't mention corticosteroid treatment - have you been on pred? Have your flares been linked to pred dose? Reductions?

      If you follow this link

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

      you will get to a post with a load of other links where you will find more info and other forums.

      Finally - your mention of RA: about 1 in 6 patients who are given a diagnosis of PMR at first have it revised to something else at some point, very often late onset RA which can appear identical to PMR in the early stages. Without knowing a lot more about your history of treatment it's impossible to comment about that: have you been on pred, if so at what doses, how did you react and so on.

      But ask away - we'll try to answer as best we can. But do go and have a look at the other links too.

    • gayle42253
      gayle42253 EileenH

      Posted

      Thanks for all the great info.  I have not come upon a discussion as good as yours anywhere previously.  I was treated with prednisone immediately, even before any diagnosis.  It worked until they tried to wean me off.  Came right back.  I had then been weaned down to a 5mg /day dose.  AFter cryotherapy I was able to go off altogether for long periods, with less severe flare ups.  But this current one is pretty bad, which led to my question.  Almost everything I have read calls PMR a temporary (though possibly long term) condition.  But i was losing hope of it ever going away - and it sounds as though the reports of it being a condition that eventually goes away are misleading at best.  I am back on pred right now, and as usual, it helps.  I am going to get more cryotherapy as well.  It is just that the closest place is over an hour away, and it is recommended that you do several doses close together.  SO it's hard to get there while also working an hour in the opposite direction. LOL!  But the results are worth it, especially if I can get off the pred again.  I also appreciate hearing that my hands feet and knees don't exclude PMR as a diagnosis - because I'd rather know what I am dealing with than be uncertain again.  SO again, thank you for all the info, and I am going to look into all that you shared.  I do recommend the cryo for anyone with this condition - I could not believe the improvement after even only one session. And I feel so much better to just have someone validate what I am going through.  I know no one else with this condition near me.   Good luck with all this mess!  It takes so much out of your life when everything is hard to do.  Just try to keep on dancing anyway!  WIth MUCH appreciation!

      Gayle

    • EileenH
      EileenH gayle42253

      Posted

      You will see fron the Quick and Kirwan paper I gave you a link to that you don't take pred for a short taper - you need it for probably 2 years, often longer. About 25% of patients get off pred in 2 years or less but remain at a higher risk of relapse. About 50% need pred at a low dose (15mg is regarded as moderate) for yup to 4 to 6 years and the rest for longer, a few for life with a low dose. Using pred for a short fixed taper will almost guarantee a relapse - it is a long term thing that works best with a lot od flexibility. Further down the thread that link takes you to is a slow reduction plan with reasoning which a lot of people on the forums are using/have tried or at least something very similar. It works for almost all of them to keep them reasonably pain-free and able to function fairly well. 

      How interesting - my tag line on another forum is "Maybe I can't stop the downpour, but I will always, always join you for a walk in the rain." and just a couple of days ago I thought about changing it to "Life may not be the party we hoped for but while we are here we might as well dance" ...

    • jane0118
      jane0118 EileenH

      Posted

      I do like that. I know PMR is not good, but as my GP thought I had a really nasty neurological condition, I think PMR is better. Before Christmas I was Ok, not doing too much and resting when possible, so dancing was possible. Not today though! My hip is just too painful.

      Two years of pred is not that bad afterall...

      My son has asthma and is on a very strong steriod inhaler. I had all sorts of warnings about the side effects and we have gradually reduced to suit him, not the GP or the CCGs budget. Your PMR will take as long as it takes!

  • karen31307
    karen31307 jane0118

    Posted

    Hi Hane,

    I'm new here.  Two years ago I was diagnosed as having PMR and was told it lasted for a year.  During that year I took Pred. weaned off and told by the Rhumy that the PMR was gone.  At that end of the year I changed Rhumy's and was told that I had RA.  Now I am on Mtrx. and have occasional flares but am somewhat controlled.  I am now just finishing my second bout of Shingles.  I have a very high pain threshold as I wouldn't take pain meds for my Guillian Barre when my legs were paralyzed.  Consequently I'm not sure if the Shingles hurt much.  I am wondering if PMR can lead into RA. My doctors won't say.

    Karen 4307

    • EileenH
      EileenH karen31307

      Posted

      You would get more responses if you had started this as a new thread - this one is well over a year old and I'm probably the only person still following it. Also, if you read the responses above you will see your question was answered in the series of answers.

      About 1 in 6 patients with a diagnosis of PMR later have it revised to something else, mostly late onset RA. Not because their doctor got it wrong but because they present almost identically in many cases. What we call PMR is not the disease itself but the symptoms of the real cause - and there are quite a few different ones.No-one knows whether PMR morphs into RA - it may do, they are both autoimmune disorders. That's why your doctors won't give you a straight answer, because there isn't one.

    • EileenH
      EileenH jean39702

      Posted

      Oh good! You never know with these ancient threads...
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