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

Test results

Posted , 6 users are following.

Cakegal
Cakegal

Hi all,

Hope you're all having pain free days. I had a doctors appointment today to review my latest blood tests. My ESR is still raised and the rheumatic screening (done for the first time) has also flagged up. My doc was already planning to refer me to a rheumy anyway, so these results just confirmed it. I have my referral and I get to go via BUPA through work.

My question though is that for the first time, my GP mentioned RA. This scared me rather as my grandmother had severe RA and I remember clearly how she suffered. Has anyone thought they had PMR and gone on to develop RA or been told they actually have RA and not PMR? I'm not trying to self diagnose, just interested in the experience of others.

Thank you smile

0 likes, 11 replies

11 Replies

  • Daniel1143
    Daniel1143 Cakegal

    Posted

    My doc did the same with me last month: scared me with the prospect that my PMR was really a precursor to RA.  I was quite shaken at the time. But i do not have any of what I undestand to be the classic symptoms of RA - namely swelling and joint pain in my hands and feet.  He was ocncerned because of a series of blood test results, but my internist replicated the tests with very different results. 

    My sense is that my Rheumatologist was off base, and I continue to believe what I have is PMR.  My general doc agrees.  Truthfully, I think many of the specialists are throwing darts in the dark.  In the end, they seem to know very little about these auto-immune diseases and often speculate on the diagnosis.  My experience, anyway.

  • gillian_25383
    gillian_25383 Cakegal

    Posted

    Yes,this time when referred back to the hospital was mentioned (in passing )that I have PMR,RA &OA .It made my day☺Like you my mam and my maternal grandma both had RA.Luckily treatment is a lot better now.Good luck
  • EileenH
    EileenH Cakegal

    Posted

    About one in six of patients who are originally given a diagnosis of PMR goes on to have that diagnosis revised and the most common end diagnosis is LORA - Late or Elderly Onset RA. There are other things though.

    You say the rheumatic screening has "flagged up" - but flagged up what? Is it one of the specialist things that is showing positive or is it "just" rheumatoid factor? If it is the RF, then it is fairly meaningless without the much more fancy stuff. People can be rheumatoid factor positive and be perfectly healthy and there are people with RA who are what is called seronegative and show no rheumatoid factor. It is all just part of a jigsaw and it is the whole picture that is important.

    Your grandmother will have had RA many years ago - I've no doubt she had twisted joints and was very disabled and in a lot of pain. There are many drugs available now which, when started early enough, as soon as the diagnosis is confirmed, prevent the joint damage advancing - they are called DMARDs, Disease Modifying Anti-Rheumatic Drugs. They do what it says on the tin: they modify the progression of the disease and prevent the long term damage your grandmother suffered. It is very rare to see people with such badly damaged joints these days.

    In some ways, RA is preferable to PMR since there are a lot of drugs which have superb results these days and which will be funded where needed - whereas for PMR there is pred, the cheapest version only in the UK, and sometimes life seems to be a constant fight to be allowed to take it - at all sometimes and even when, enough. 

    Don't panic - wait for the expert's opinion on RA, or other form of arthritis.

    • Cakegal
      Cakegal EileenH

      Posted

      Hi Eileen

      Forgive me for not replying sooner. My munchkins (aged 1 and nearly 3) keep me so busy! smile

      Yes you're absolutely right. My grandmother had terribly swollen and unusable joints and was wheelchair bound towards the end of her life (she died of cancer at 67). I've always held a quiet fear that I may end up with RA, but I have tried to educate myself to know that it's not hereditary and has many other factors. As you do rightly say, wait for the rheumy and their expertise.

      The test the GP ran showed "moderate". He said it was the general test for a rheumatic marker. My ESR levels have been 29, 39 and 53 depending on the various blood tests over the past three months. I'm also consistently anaemic.

      Ps happy Easter ☺️

    • EileenH
      EileenH Cakegal

      Posted

      Anyone with munchkins of that age doesn't need to apologise for taking a few days to reply! And it was a holiday to boot! Hope they didn't over-do the chocolate!

      Yes - that sounds like "rheumatoid factor" which on its own is about as much use as the proverbial chocolate teapot.

      Being consistently anaemic is a sign of "something autoimmune" - what it is remains to be seen.

  • beatrice74480
    beatrice74480 Cakegal

    Posted

    Hi I really sympathise with all PMR sufferers,I have had it since 2013 and in January I was totally free of medication..My ESR was 7 so Doc says yes that is it,,, After 6 weeks of creeping up symptoms of very painful hands and grinning and determind not to go on Pred again I had a ESR tes it was 12 but acceptable, Another four weeks and My Rhuemy appt came, Shoulders were not good also.Further tests Xrays and Hand Scans,  whilst waiting for results another ESR test at now 21 and CCp 16, Pains niggling, but didnt take pred,  Back to Rhuemy yesterday for results, Hand scans show some inflammation and Osti Arthiritis,he said ESR of 21 was ok but as mr right shoulder and elbow are very stiff and painful to go on 2,5 Pred for a couple of weeks and then go back for Cortisone injection,  I too was worried about RA but termed as Inflamitory arthiritis in hands also as well as Ostio I really dont know, however the hands do improve on Pred, It is a long journey we are all on and a painful one , I am a fit 76yr old play outdoor bowls all year aand walk a lot within reason but would love to be totally pain free as we all would, Good luck,
    • EileenH
      EileenH beatrice74480

      Posted

      If you were still taking even a small amount of pred when that ESR was 7 then that is often enough to keep the PMR inflammation at bay and the blood markers in the "normal range" as long as you keep taking it. The reading of 7 is you "best" reading - and anything above that is showing you have increasing inflammation.

      "Normal range" is the span of reading you can get if you take blood from thousands of healthy people and measure the ESR. Some will have very low figures, some with have much higher figures, most people will have something inbetween and the normal range is the lowest to highest that you find in 95% of the people.  It doesn't matter that 20 is still "within normal range" - it isn't YOUR normal, your normal is down in single figures. Your neighbour might have a normal level that is 15, in that case 21 wouldn't be very high relatively speaking but for you a reading of 21 is three times higher than it should be.

      I would say your PMR is still active and you still need a very low dose of pred to be comfortable and prevent the inflammation building up. If 2.5mg pred keeps you out of pain it isn't going to do much harm - it is a very low dose. If you leave it very long the inflammation may build up to the stage where you are as bad as you were before. I hope that doesn't happen - but it could.

    • EileenH
      EileenH beatrice74480

      Posted

      If you were still taking even a small amount of pred when that ESR was 7 then that is often enough to keep the PMR inflammation at bay and the blood markers in the "normal range" as long as you keep taking it. The reading of 7 is you "best" reading - and anything above that is showing you have increasing inflammation.

      "Normal range" is the span of reading you can get if you take blood from thousands of healthy people and measure the ESR. Some will have very low figures, some with have much higher figures, most people will have something inbetween and the normal range is the lowest to highest that you find in 95% of the people.  It doesn't matter that 20 is still "within normal range" - it isn't YOUR normal, your normal is down in single figures. Your neighbour might have a normal level that is 15, in that case 21 wouldn't be very high relatively speaking but for you a reading of 21 is three times higher than it should be.

      I would say your PMR is still active and you still need a very low dose of pred to be comfortable and prevent the inflammation building up. If 2.5mg pred keeps you out of pain it isn't going to do much harm - it is a very low dose. If you leave it very long the inflammation may build up to the stage where you are as bad as you were before. I hope that doesn't happen - but it could.

    • beatrice74480
      beatrice74480 EileenH

      Posted

      I totally agree Eileen.I was taking 1mg Pred every third day for about 2months felt well and was not in usual pain and stiffness..That is now my aim again eventually.On 2.5 daily I don't have discomfort or joint stiffness and will see how I go on for a couple of weeks.If it doesn't stabilise I will see my GPS and increase a little.We know individually what our symptoms are and could feel over a month off Pred that it was on the move again.I tried to persevere hoping I wasn't right. Thanks so much for your continuing advice it's so reassuring.I have a lovely husband who has just had a Dementia diagnosis so I will need to keep as good as possible.
    • EileenH
      EileenH beatrice74480

      Posted

      I'm so sorry - I do hope this has been identified early. It is a cruel disease and I wish you all the best together as you face up to it. In that case - did the diagnosis coincide with the stirrings of the PMR?

      I had/have a couple of friends who live/d with the same problem. One's husband developed it after a head injury at work in his 50s and the other lives with a cousin who, now in her 80s, has early dementia. They have both managed well for some considerable time with good "memory clinics" - not sure about medication though. Little notes all over the place - and the married friend had 2 almost identical kitchens, one in the UK and one in Spain, which her husband could actually manage to produce food out of if he had written instructions. Which is more than my husband could do now!

    • beatrice74480
      beatrice74480 EileenH

      Posted

      Eileen you have made a very v alid point , I was warned three years ago of my husbands Memory loss and the Doc actually said he had Alzheimers, at that time he was well but becoming forgetful, Looking back my PMR was diagnosed at that time April 3rd to be precise 2013,  My Husband will shortly be 80 and looks amazing for his age , no grey hair and we still go long walks and little breaks away, but have not had a winter holiday this year thru choice, I was not feeling upto the airport etc. Having a little Steam train break in four weeks with Hotel stay etc in Lakes. Could be interesting. I seem comfortable on my meds at this stage and have played competative Bowls four days this week but really need a quiet weekend now, Thankyou for kind words,
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.