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Think I've been misdiagnosed with PMR.....

Posted , 7 users are following.

jennifer008
jennifer008

I am 38 and have just been 'diagnosed' with PMR. My ESR was 12 and my CRP was 30. Two days ago I was prescribed 15mg a day pres and after one day developed extremely stiff and sore left shoulder....So bad that I couldn't sleep with it last night! Yes, I have been achey for a while and yes, stiff in the mornings and yes somedays are worse than others and I feel a lot older than I am.....But how will I know whether it is PMR if I have to stop taking the pres due to side effects? Anyone else had this with Pres? Is it just PMR worse than before, and why would it happen after taking the steroids??? BTW I have had a similar reaction to an antibiotic in the past.....Really confused ;(

1 like, 7 replies

7 Replies

  • pat38625
    pat38625 jennifer008

    Posted

    Hi Jennifer sorry to hear you are having a time of it.  I am reasonably new to PMR but have got lots of advice, support and invaluable information from people in this forum.  They are more experienced than I am and will be able to advise you.  Hang on in there and someone will be along soon I hope.  You take care.   Pat
  • Diana112
    Diana112 jennifer008

    Posted

    Hi Jennifer, I can understand your concern.  To have PMR at your age is extremely  rare and PMR usually responds favourably to prednisolone medication.  Maybe arthritis is a more likely answer to your stiffness/pain.  I am sure others will be with you soon to help with your confusion.   Best wishes, Diana
  • MrsO-UK_Surrey
    MrsO-UK_Surrey jennifer008

    Posted

    Jennifer, PMR would be very unusual at your young age, although not impossible.  As there is no one test to confirm PMR, and a raised CRP doesn't just indicate PMR.  Other tests are usually carried out to exclude other conditions. For instance, have you been tested for rheumatoid arthritis?  Have you had a blood test to check your Vitamin D levels - a deficiency of the latter can lead to pain similar to that of PMR?  Also, we have come across some  people who have been diagnosed with PMR, treated with steroids which have failed to give relief and have gone on to be diagnosed with a hormone deficiency.

    It might help if you can tell us more about your symptoms, for instance where do you feel your "aches"?

  • tina-uk_cwall
    tina-uk_cwall jennifer008

    Posted

    Hi Jennifer, yes, I have to agree with the others, you are very young to have PMR although there is another lady on another forum who has PMR and is also your age. Also, you have described your pain as achy. I can't really say that pre diagnosis I could ever describe my pain as achy. From day one of my pains appearing the pain was very unique and a totally different pain from which I had ever experienced. my pain was vice like and excruciating. Now you are on prednisone again there should be a marked improvement not a worsening of the pain. You ask how you will know if you really have PMR. Well, the definitive test for PMR diagnosis is how well and how quickly a patient responds to prednisone treatment as currently there is no other medication that effectively reduces the inflamation that in turn causes the pain. As you say there are side effects with prednisone but if it transpires you do not have PMR and are therefore taken off the medication a short course will do no real harm. I would give the medication at least 4 days and return to your Dr if there is no improvement. All the best, christina 
  • jennifer008
    jennifer008

    Posted

    Thank you so much for your replies,I currently have a B9 (folate deficiency) which is the second time in 4 years. I don't know if that can mimic PMR? I cannot find a link between B9 and CRP. My B12 is normal. My aches are 'random' and generally occur in the neck, shoulders, back and pelvis. I can have it one day and gone the next. Sometimes I have a needle like pain on the tip of my left shoulder blade. However, if you press down on these areas they really hurt, as if bruised. I had an ear infection in early January which developed into a severe headache like never before for about 10 days. The Drs prescribed amoxycillin as they thought that it was sinusitus. To my mind this didn't touch the headache. I then visited the Dr feeling dreadful and they prescribed diclofex, which also made me feel rubbish! At this point I had the blood test. I stopped with the diclofex also

    Then the folate, the CRP and the ESR were 'abnormal' and the Dr requested a visit. So then I went along and he prodded me an decided to try to treat me for PMR......And here I am. 4 prescriptions later! incidently my shoulder and neck are much relieved today. I told the Dr yesterday that I was going to go on an anti inflammatory health kick for three weeks and would like another blood test after this time. Please can anybody recommend a great cook book/ lifestyle book for an anti inflammatory approach? With thanks in advance, and sorry for the long list, but I am sure that you might have real insight into this. I have never been tested for arthiritis.

    Jen

    • EileenH
      EileenH jennifer008

      Posted

      The first thing is I think it is very unlikely that is a reaction to pred - especially if it were PMR! 

      PMR is not the disease - PMR is the name given to a set of symptoms which can have a lot of different causes and the diagnosis of pred-responsive PMR, which is what we talk about on this forum, should be made after ruling out a whole load of other things, including other inflammatory arthritises and cancer. That requires a wide range of blood tests - and it doesn't sound as if that has been done. 

      Also, the guidelines from the British Society of Rheumatologists say quite clearly that atypical cases of suspected PMR should be reeferred to a rheumatologist - and at 38 you definitely belong to that classification! The general age criterion is "over 50" - that doesn't mean it DOESN'T happen in younger people, what it means it that ather things are equally or more likely.

      What you describe could well fit several sorts of arthritis - the random pains, moving around and bad one day, fine the next, is not typical of PMR which tends to match on both sides of the body to some extent and rarely "disappears" even for a day or two, but is often an early sign of other forms of arthritis. The pressure on areas as you describe is also a very typical sign of bursitis or tendonitis - inflammation of bursae (like housemaid's knee but it happens in other joints too) or inflamed tendons. 

      Here is some info about folate deficiency:

      https://patient.info/health/folic-acid-deficiency-anaemia

      I think you need to tell your GP you want a referral to a specialist - because it sounds as if he is casting around in the dark. Low folate can be associated with some autoimmune disorders and arthritis is also often an autoimmune disorder - once you have one autoimmune disorder you are at more risk of developing another. The first variety to start with would be a rheumatologist - they may have some insight into further referrals but a GP is almost certainly out of his depth here. Your folate deficiency may be more in the line of a haematology expert.

      Where are you? In the UK or the US?

    • cindy63197
      cindy63197 jennifer008

      Posted

      Your headache makes me wonder if you were considered for Giant Cell Arteritis? It's associated frequently with PMR.
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