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Did you hear that? that's the sound of ranks closing...!!!

Posted , 11 users are following.

IssyR
IssyR

Just me AGAIN...well i had my 2nd appointment with the other doctor in the practice yesterday..the ESR result she ordered is 9...!! SO she says that means it's definately not my PMR that's causing my pain. She said the only things my blood tests had shown were that i had gallstones and that i'm perimenapausal...!! i asked how come i was labelled perimenapausal when i haven't had a period for three and a half years...she said everyone is different...she then went on to say studies have shown it doesn't just cause flushes etc but can cause joint pain as well so maybe that was part of my pain...i said i'd read somewhere a low ESR number didn't always mean it isn't PMR she said she'd e=mail a rheumatics helpline...so i asked what i should do in the meantime about my pain..!! Well it won't do any good to increase the steroid as it wouldn't be effective, and although you're on a lower dose of tramadol studies show that it's not always effective if the patient has chronic pain" then she went on to say "i'll send off that e-mail to rheumatics" as in consultation over...i said again "what have i to do about my pain" "well if you think it'll help you can raise the tramadol" maybe i'm expecting too much but i'd have thought if a doctor thought the medication you're taking wasn't doing the job there would be some patient doctor discussion to try to rethink pain meds...yesterday morning i added 100mg tramadol to my meds...it definately made a difference to the arthritis in my feet but the whole pelvic girdle was still really sore. so decided today to put my steroid up from 7mg to 10mg and it made a big difference...but i don't know what to do from there as i'm 99% sure they won't sanction an increase...i am so completely fed up...i've had this doctor in the past and she was really nice but i think after my little ding dong with the other doctor they've closed ranks...i wondered if i should ask for a referral to the pain clinic...what do you think???

1 like, 33 replies

33 Replies

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  • nick67069
    nick67069 IssyR

    Posted

    I am much less patient then you. To diagnose my PMR I had to go to 3 different doctors... If the doctor did not resolve my problem, I moved on... Maybe it was extreme, but I gave first and second one week ... 3rd doctor listen much longer to my symptoms, suspected PMR and referred me to rheumatologists. It took me exactly 4 weeks from the first attack to diagnose.
  • linda17563
    linda17563 IssyR

    Posted

    I may have got this wrong...but can`t you ask or pay to see a Rheumatologist....I am the other way round....doctor much more understanding and works with me....It sems we all have to find the person that does that....although it shouldn`t be.  Many doctors just go by what they read....not the patient talking to them.....don`t give up trying, the stress of being frustrated will only make things worse for you....as I know from experience!  Good luck and keep us posted.....
  • Judyg
    Judyg IssyR

    Posted

    Hello, have you contacted the PMR/GCA helpline they are extremely helpful with their info. Also a book by Kate Gilbert is worth reading all proceeds go to the charity.  My GP upon reading said she would recommend to any of her patients who  have PMR/GCA or indeed those taking steroids.

     

  • EileenH
    EileenH IssyR

    Posted

    Either you have to demand a referral to a rheumatologist (who may still disagree) - which will take ages probably - or you move to a different GP practice. 

    She is wrong - approximately 20% of PMR/GCA patients never mount the inflammatory response (raised ESR/CRP). Has she checked the CRP too? Occasionally it may be raised without the ESR being raised but I have never had raised levels of either. 

    You could take this reference to her:

    Polymyalgia rheumatica in patients with a normal erythrocyte sedimentation rate.Helfgott SM1, Kieval RI.

    where they state about a fifth of the patients they studied had normal ESR levels.

    or this professional reference from this site:

    https://patient.info/doctor/polymyalgia-rheumatica-pro

    which says:

    "PMR can be diagnosed with a normal ESR and/or CRP if there is a classic clinical picture and response to steroids. These patients should be referred for specialist assessment.[4]"

    The pain clinic isn't the real place to be either - it is a rheumatologist you need.

    Studies DO show that PMR symptoms can be caused by hormonal imbalances in the perimenopause - however, they can also be diagnosed by doing hormone levels and treated appropriately. She can't use that get-out and not do anything to check that is the case. 

    So don't give up - even when she doesn't email the helpline or they agree with her! I can play the references and helpline game too. She be quicker googling the reference than sending the email - I searched "normal range esr in polymyalgia rheumatica" and it took a fraction of a second...

    • Judyg
      Judyg EileenH

      Posted

      I absolutely agree, my consultant says 'treat on symptom not bloods', which GP does of course disagree with.
    • EileenH
      EileenH Judyg

      Posted

      I wonder why rheumies learn clinical decision making but GPs become so attached to their bits of paper and normal ranges?
    • Judyg
      Judyg EileenH

      Posted

      Who knows, but so many of the ranges date back to the war  I understand, when nutrition was poor, so certainly shouldn't  apply today!  But hey it's only the patient that suffers.
    • EileenH
      EileenH Judyg

      Posted

      Not that many really I'd have thought - relatively speaking there wasn't that much that could be measured then. There are loads of things you couldn't measure when I worked in biochemical medicine 40 years ago but can now. 

      In the UK at least the diet during the war was actually better than now - rationing was designed to include all the nutients needed for everybody, regardless of income. Eating as much as you like doesn't equal good nutrition - there are plenty of cases of malnutrition nowadays. Mainland Europe was a different case but the USA never had food shortages.

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      I can certainly second that you can't go on raised ESR/CRP alone. My rheumy's mantra is also treat first, investigate further later.

      I'll put up a separate post on my very recent scare and flare in a little while.

  • beatrice74480
    beatrice74480 IssyR

    Posted

    Hi  I havent been following the forum lately as I am off Pred now for two months after having PMR for 30 months,It has been a long journey but still keep fingers crossed, My ESR came right down to 7 and it was considered the end of PMR but as we know it can flare at anytime, it hasnt been a pain free journey but I have percevered with Voltorol gels help. I finished taking Pred by lowering gradually and taking ,5 of a tablet alternate days for 2 months, Mentally it helped.My Rhuemy and Doc where overjoyed when I finally said "no more ", I still see my Rhuemy as I have confirmed Arthiritis and Carpel tunnel in both hands. I am delaying surgery because I care for my husband with early Dementia, Please persevere with lowering Preds especially if you are 60 or less but my Doc says if people get to 80 ish they leave them to obtain a better quality of life on Preds, Good luck it is a painful journey .
  • beatrice74480
    beatrice74480 IssyR

    Posted

    Hi I feel lucky that my Doc picked up on my symptoms on first visit. He organised blood test next day and two days later Esr was 38 and I was on Pred. Saw Rhuemy privately as waiting list was too long and saw Doc every few weeks for blood test. My Doc has been excellent advising me to reduce when he thought it was time.However I followed Eileens reducing advice and it worked. I am seeing Rhuemy again in two weeks which hopefully will be a final visit. Been off Pred about two months or over now but Esr is now7 so as my shoulders stiff in mornings my Doc says not Pmr. I am 75 and try to exercise daily.
    • EileenH
      EileenH beatrice74480

      Posted

      If the PMR were beginning to return it could have slight symptoms long before the ESR would rise - there can be quite a lag.

      So do keep an eye out and get the GP to check every so often, especially if you have symptoms. But there is also the conundrum that in some people the inflammatory response (the raised ESR/CRP) doesn't always happen in a flare. No-one knows why - it is just so.

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