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PMR Diagnosed after 21 month Tour of Medical Providers

Posted , 8 users are following.

holly28923
holly28923

Thanks to everyone on this site.  I have only had one other post from a couple months ago, while I was waiting for a diagnosis. My old Rheumi was not a nice person and didn't think it was PMR.  He told me to get a second opinion so he would have someone to agree with him.  I did, liked her and switched Rheumis.  With new bloodwork she has confirmed it's PMR.  If PMR typically burns itself out after a couple years, have I served part of this sentence by white knuckling it for 21 months? That would be nice.    

0 likes, 23 replies

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  • kimberly04963
    kimberly04963 holly28923

    Posted

    My doctors are playing games with my health too. My GP has diagnosed me as having PMR but rhumi says it's not because I'm only 49. I will see her once more to get referred to a different rhumi. I suspect I have GCA as well because of headaches and jaw pain. It's so sad that we have to fight tooth and nail to advocate for ourselves.
    • lodgerUK_NE
      lodgerUK_NE kimberly04963

      Posted

      I am sorry to say the following, but you need swift treatment.

      You cannot wait for an appointment with headaches and jaw pains.  These are two of the classic symptoms of GCA and left untreated, can and do cause partial or total loss of sight and once tthat happens it is not reversible.

      If your both the medics you have seen so far, say it is not because of your age, they are wrong.

      On this page there is a search box, type in Guidelines for PMR and GCA, failing that go the the British Society of Rheumatologists website and type in exactly the same, then download thise Guidelines and take yourself off to A&E, tell them exactly what is going on and if necessary, ask to see the Consultant in Charge of A&E.

      It does not matter if we are wrong, what matters is that you do everything to save your sight.  

    • kimberly04963
      kimberly04963 lodgerUK_NE

      Posted

      You are absolutely right. It's my vision in the line and my doctors are not taking this seriously enough. My rumi is on vacation after this week so I can't get apt till Dec 29. I am really scared.
    • EileenH
      EileenH kimberly04963

      Posted

      Where are you Kimberly? If you are in the UK then you could get your GP to send you to A&E - the ER in the USA. 

      If you are in the US then you have more choice I assume - either way you need to find someone to take you seriously. Wherever you are your GP can have the ESR and CRP blood tests done. If they are high it shows there is something to be taken seriously. About 1 in 5 people with PMR/GCA don't have these raised blood markers and then it must be done on symptoms. But you need to to see someone LONG before Dec 29th - if you are in the US that rheumatologist MUST have someone taking his emergencies and if you are lucky that doctor may actually be more use.

    • kimberly04963
      kimberly04963 EileenH

      Posted

      I'm in Alberta,Canada. The Docs were not even checking my ESR just my CRP. Had blood work done again yesterday and made sure ESR was included. Bunch of incompotent morons.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada kimberly04963

      Posted

      Kimberly, I don't know about Alberta but in BC I would simply go to the emergency department at your local hospital and be armed with the information Lodger suggested. If you tell them there is a possibility you can lose your sight and have medical documentation to back it up I'm sure they would take you seriously.

      Don't mess with your sight!!

      🌸

    • kimberly04963
      kimberly04963 Mrs.Mac-Canada

      Posted

      I've been to emerg twice because spasms headache and jaw pain and they have done nothing. Perhaps I need to go to hospital in Edmonton rather than Leduc. I had to go to emerg Sat night and they just gave me a shot of Toradol and sent me on my way. Quacks the whole medical field in this province. I'm so scared.
    • Anhaga
      Anhaga kimberly04963

      Posted

      Have they ever heard of GCA?  Insist on treatment for GCA, it's YOUR eyesight and better safe than forever sorry.  Is there some one else who can go with you as who will help make sure that you are taken seriously?
    • kimberly04963
      kimberly04963 Anhaga

      Posted

      I'll bring my daughter with me and see if she can get through to them. They don't even check my ESR here just my CRP. I added the ESR to the req myself yesterday when I had blood work done. It's pathetic here
    • kimberly04963
      kimberly04963 Anhaga

      Posted

      I will. Thanks for all the support. I'd go crazy without this group.
    • EileenH
      EileenH kimberly04963

      Posted

      There isn't that much difference - ESR changes because amongst other things the CRP changes so to come extent they reflect one another. ESR isn't as reliable as CRP, especially if it is a long way from the place your blood is taken to the lab because ESR must be set up within 4 hours of being taken. Nevertheless, in some people the ESR shows something the CRP doesn't so both covers all bases, but it isn't essential.

      You probably do need a bigger unit - is the Leduc one what in the UK would be called a "Minor Injuries Unit"? You do need to have a consultant in Emergency Medicine if you can find one.

    • kimberly04963
      kimberly04963 EileenH

      Posted

      Yes it's not a huge hospital like U of A in Edmonton. Got to get this figured out somehow.
  • Anhaga
    Anhaga holly28923

    Posted

    Oh that would be a nice thought.  That would mean that I'd be about 14 months closer to my recovery, too.  But I don't think it works that way and I have a personal fear that delay in treatment also means longer for the inflammation to damage ones tissues and make for a longer recovery.  I wonder if there has been any research done on that.  Some of the people on this forum were not diagnosed for many years, and several years later are still on prednisone.  I do hope that your diagnosis has got you the treatment you needed and you are feeling a whole lot better.  Now you have to treat yourself carefully so that your body can heal.  The experts on the site will give you great advice so I won't natter on any more, other than to say that the "side effects" of pred are often invisible (thinning bones, potential diabetes) so it is wise to start dealing with the possibility of these effects right now. Best wishes on your journey.
  • EileenH
    EileenH holly28923

    Posted

    You're right and it would be very nice, Very nice indeed - but I'm very sorry to have to disappoint you. PMR doesn't typically burn out after a couple of years - neither accordng to the literature nor according to the evidence you will find on the 3 PMRGCA support sites! I don't care what doctors may think - according to the literature about a quarter of patients are able to get off pred in under 2 years but this group remains at a higher risk of a relapse. About half take up to 4 to 6 years to dispense with pred and the rest take much longer, sometimes requiring pred at a very low dose for the rest of their lives. The standard German rheumatology textbook says an average of 5 years - a much more realistic figure I think and one that really does fit well with the people we have met through the websites. I do appreciate that the websites are maybe a bit skewed in that it is people with problems who frequent them but even so...

    I spent 5 years with untreated PMR - 6 years post diagnosis I suspect it is still here but I am down to 3 or 4mg of pred and feel well and able to do most things. I've never had the impression it ever went away in that time although I suppose it could have but I didn't notice as I was on too high a dose of pred to be able to say.

    Kimberley - how on earth can anyone say you can't have PMR at 49? It is to be considered in any patient with appropriate symptoms over the age of 50 - that is the international guidelines I'm speaking of. How can you say you can't have it at 49 but you can at 50? And anyway, it's incorrect. There are documented cases of GCA - with histological proof - in patients in their 30s.  

    • holly28923
      holly28923 EileenH

      Posted

      I guess that was wishful thinking.  I have been feeling better on 15 mg prednisone, but now have some of the side effects - dizzy, sweating and feeling down.  Perhaps that's just the diagnosis settling in.
    • kimberly04963
      kimberly04963 EileenH

      Posted

      I know, it's scary and nobody in healthcare seems to be listening to me. I think I've had this for at least 5 years when I look back at my symptoms. I'll keep Dr shopping.
    • EileenH
      EileenH holly28923

      Posted

      It could be either - but don't allow yourself to get down - the way now is up! You will learn to manage it all once you get your head round it. Look after yourself - you are a poorly person so you are allowed to pamper yourself a bit (not chocolate in large amounts though ;-)  ). Learn to love pred and its chubby cheeks - because hating it and fighting doesn't get you anywhere. It's a waste of energy you could be using to live better.
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