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PMR & GCA

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kimberly04963
kimberly04963

It turns out my fever and chills are not just a flu. Had my levels checked yesterday and got the dreaded call from the Rheumy today notifying me that they are sky high on 20 mg of Prednisone. He increased it to 50mg and have to recheck levels on Monday. Said without a doubt that because I haven't responded to 20mg I also have GCA but that a biopsy would probably be a false negative now because of the Prednisone. So here I sit frustrated and angry because if the first rhuemy in Sept had not brushed this off because of my age, who knows I mightened be a sufferer of both conditions today. Thank God for the wonderful Rheumy I have now. Even gave me his cell number because He is concerned. Now that's what I call service. Koodos to the Kaye Clinic in Edmonton.

3 likes, 20 replies

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  • judy20492
    judy20492 kimberly04963

    Posted

    So glad you finally have some who really cares.

    I'm sorry you have GCA, but thankful your Rheumy is on the ball.

    My experience with the type of flare you had (the fever and chills) is that it is very extreme and really gets your attention, and most of the time something bad is going on in your body. Before I was diagnosed, I was have a flare (with fever etc) every couple of weeks and I didn't know what was causing it. I felt my body was saying " pay attention, this is important". I finally went online and self diagnosed my illness and went to my GP, papers in hand.

    • kimberly04963
      kimberly04963 judy20492

      Posted

      It just enrages me that so many stories on this forum tend to involve drama like mine. What is happening in the medical profession in today's modern technology. Are they educating heartless individuals who don't give a damn anymore? Sorry for my rant. I feel for everyone on the forum and wish you all well.
  • Crystalcave
    Crystalcave kimberly04963

    Posted

    I was diagnosed 4 years ago after presenting at A&E and a gastro doc said I had classic symptoms.  I thought I was dying of the flu and had had the symptoms foe weeks.  He put me on 60 mg of pred and witching 12 hours I was completely pain free, hadn't felt better in weeks. Anyway I have trouble with my Rheumy, he is always moaning about the pred I am on(20 mg) at the mo' . Recently went back up because of a bad flare. I wish I could get another Rheumy but he is the head consultant.  Doesn't have much sympathy at all.   

    Anyway Kimberly I'm sorry about your troubles, hope it all settles down soon and you'll be feeling well again.  

    Best wishes Sue

    • tina-uk_cwall
      tina-uk_cwall Crystalcave

      Posted

      Kimberley, I'm sorry to hear of your diagnosis,but now you have it, the correct treatment and the correct care Will see you through this long and sometimes winding road to recovery. It sounds as if you now are safely in the hands of a good rheumatologist and believe me that's half the battle.

      i don't know just how young you are but I agree with you completely on the age v diagnosis issue. I was 52 when I was diagnosed 2 years ago and it was 4 months before I received a diagnosis of PMR because my GP "couldn't for the life of her think what could be wrong with me". But when I was eventually diagnosed by a wonderful rheumatologist upon my return home from the hospital I looked up polymyalgia rheumaticia online and low and behold I had been suffering from every named symtom, even down to the raised bloods, So how she could not have known what was wrong with me astounded me. But then I read that the condition only affects those over 50 and I thought to myself, I bet if I'd been older and presented myself with all the symtoms she might have diagnosed me with pmr, but because I was younger (but well within the diagnosis age range albeit just) she couldn't accept the possibility that my symptoms could be down to pmr. In other words she couldn't see beyond text books and that is wrong as we are all made differently hence the way we all to some degree experience these conditions differently.

      all the very best wishes, tina

  • EileenH
    EileenH kimberly04963

    Posted

    I've replied over on the other thread where you reported this and I'm repeating it here for completeness:

    On another forum I have just answered a question from a 23 year old with typical GCA symptoms other than raised ESR/CRP but the doctors are saying can't be GCA because he is so young. He's had all sorts of procedures done - wisdom teeth out, sinus op etc etc. The only thing that has made a difference: a Medrol pack which relieved the pain after 3 days and it returned after he stopped taking it. 

    In my response I quoted this reference: 

    Giant-cell temporal arteritis in a 17-year-old maleIraklis I. Pipinos, MD,  Russell Hopp, DO [correspondence] [email],

     William D. Edwards, MD,  Stanley J. Radio, MD

    In 2006 they said that in the previous 30 years there had been 13 reports of GCA in under 40 year olds and they found this 17 year old. It isn't common - but it happens. They aren't looking for it so probably don't identify it. I had scalp pain, jaw claudication and double vision. They either disappeared or went at 15mg pred. There are a few people on the forums who it has been decided have GCA in the aorta, but only after them being sent for something called PET-CT - a CT scan with a chemical being injected that is taken up by inflamed tissue. It isn't done routinely because it is expensive - but I suspect if it were done far more often they would find a LOT of GCA in younger people.

    Are they heartless and don't give a damn? I don't know. What I do know is that there is a generation who seem unaware that what they are taught in the textbooks is "typical" or "average". They are dependent on lab values and don't understand statistics - the normal range only covers about 95% of the patient, there are two little outliers at each end of the famous bell-shaped curve. There will ALWAYS be a few people who are very different from the majority. To find the different presentations you usually have to read the medical literature - and there is so much out there that they simply can't do it. The mistake they make then is that they don't consider that hoofbeats can mean zebras, not just horses. That if something looks like a duck, quacks like a duct and walks like a duck it could well be a duck - even if there isn't a river or canal in sight. 

    Part of what we hope to do on this and the other 2 forums in the UK which are devoted to PMR and GCA is to bring such information to the attention of the patients - and equip them to present it to their doctor. I don't expect a doctor, especially a GP, to have read all the stuff about PMR and GCA out there in the public domain that I have read. They have to care for patients with all sorts of things - my specialist subject is PMR with a bit of GCA thrown in and neither they nor I have full access to all the literature, so much is behind pay-walls these days. I do hope, however, that if I bring them a paper they haven't seen that they will be receptive to at least considering it. 

    It is strange though - rheumatologists do seem very often to be fixed in their beliefs with a set of blinkers on. And their patient relationship skills are a bit lacking...

    • kimberly04963
      kimberly04963 EileenH

      Posted

      It seems to me that GP's in UK are more aware of PMR and GCA perhaps because of the heritage link involved. I am from Newfoundland originally so this should be another factor the first rheumy took into consideration when looking at my symptoms. My ancestry is British as well.
    • EileenH
      EileenH kimberly04963

      Posted

      It shouldn't be the case though - one of the biggest studies done in PMR was in Olmsted County Minnesota. There was a masssive Scandinavian community there because when people migrated from Europe they tended to stick together when they got a suitable location - usually one that reminded them of home. Then others came to join them. Then for many years they married within their community, carrying on the genes. Many of them travelled further north too. You would imagine that the east cost of North America would have a lot of genes from the right regions!
    • Silver49
      Silver49 EileenH

      Posted

      This reminds of when I had ME but I was so fortunate in having a good GP who fairly quickly realised. I only ever went to him as a last resort so he knew there was something wrong. This was long before there was any recognition of ME. It was also in the days of the old style GP where he/  she, usually he, knew the whole family. Medicine has advanced but at what price? I am not decrying the advances but the bureaucracy is crippling the NHS and because a number abuse the system does this also muddy the water for the genuine patients? It is so sad to think that because someone comes outwith a range a diagnosis can be missed. The cynic in me says we are all average.....not!!! I am interested to know how you will educate the medical fraternity. It can and has been done but it's not an easy task.
  • artfingers
    artfingers kimberly04963

    Posted

    As I've been reading these posts, and other posts, I am beginning to wonder just exactly how different the medical system is in the UK and Europe from the U.S.A.  Over here (I live in Michigan), if we don't like an opinion (and if we have health insurance) then we can easily find another specialist or GP and get one.  Or even a third opinion.  I gather it is not that easy to switch doctors over there? My first rheumatologist was unable to figure out my PMR (thought it was fibromyaglia). I sought out another rheum. who diagnosed it. Same with other medical issues I won't go into here - thankfully I was able to go for a second and third opinion or more until someone sorted it out.  I personally would not stand for either a dr who was condescending, didn't truly listen, wouldn't accept my research, or jumped to conclusions based on preconceptions. Time for a new doctor.  I'm so glad the Kaye Clinic was on the ball for you!
    • kimberly04963
      kimberly04963 artfingers

      Posted

      Yes it is harder to get a 2nd opinion here in Canada unfortunately. I had to go private just to get my MRI done and pay out of pocket myself. An expense that could have been covered by Alberta Health if there wasn't an 8 month wait to get it done by them. I too was initially diagnosed with fibromyalgia. I've been on the hunt for answers basically since May 2014. I have to stop dwelling on what struggle I've went through to find Kaye Clinic and focus my energy on getting well. But I'm just so damn angry inside.
    • Anhaga
      Anhaga kimberly04963

      Posted

      Kimberley, maybe Marketplace or Fifth Estate could do an expose like the one they just did on the nutritional supplements industry?  Although I was a bit disappointed in those as I thought they could have gone even deeper.  But those programs do give issues a lot of publicity.
    • kimberly04963
      kimberly04963 Anhaga

      Posted

      That's worth checking into actually. Too many people are falling through the cracks. I just lost a dear friend to heart attack at age 52, I'm convinced she had GCA but was never diagnosed. Anyone else that would like to join me in pursuing this please message me.
    • snapperblue
      snapperblue Anhaga

      Posted

      Or maybe Rick Mercer. rolleyes Here in the US, the best investigative reporting seems to be on the comedy programs- the Daily Show and John Oliver.
  • tony09890
    tony09890 kimberly04963

    Posted

    In Oz we can can seek as many opinions as we like, trouble is Health insurance only pays for a small percentage of the fees.   Fortunately I'm in a good position as an ex serviceman with a Gold Heath Card which covers me for all conditions.   I find with seeking second and third opinions, particularly with specialists, time is the constraining issue:   I was referred to a Rheumatologist back in early October but I couldn't get in to see him until Xmas.   If you seek two and three opinions that's a six to nine month wait, too long for problems like PMR.   My GP obviously doesn't know alot about PMR and when I went to another for a second opinion found that GP was the same, I happened to 'vent' on another forum I belong to (non medical) and lo and behold one of the members was a GP who'd had experience with PMR, he PMd me with some info along with his prednisone tapering advice.   He didn't tell me anything I didn't already know (thanks to this forum) but I was surprised at his knowledge of the condition and his willingness to contact me and offer assistance.   In defence of my GP, whilst he may not have a good knowledge of PMR or prednisone tapering (he is only young, probably still in his 20s) he does appear to care, is willing to listen, doesn't rush you and is prepared to spend as much time on a consultation as is required.   Little things like that are rare in the medical field.
    • EileenH
      EileenH tony09890

      Posted

      In the UK you can see as many doctors as you like - if you pay for it, the same as in the US. Everyone is entitled and able to have private medical care - either by having a medical insurance policy or by paying out of pocket. No different from the US or Canada. Many people have private medical insurance when they work in the private sector.

      The NHS is, to some extent, similar to the VA healthcare or Medicare - free at point of delivery but you are limited to some extent in which hospital you can attend. For normal run-of-the-mill stuff you go to your local hospital. For the complex you will usually be referred to the local expert team, for the really rare, to the national experts.

      The significant difference? The NHS (still) covers you for medical care whatever you have - no exclusions - and you will never be faced with medical bills that mean you have to sell your home to pay them or even become bankrupt. I do know people that has happened to in the US who have lost their job and so their health insurance. Everyone is covered in the UK by entitlement by residency. You may not have a totally free choice of doctors or medication - but that applies with medical insurance in the US, you have to see a doctor who takes your insurance and there may not be one local to you, there are lots of copays and premiums plus copays are often bigger than someone in the UK may pay for a private consultation.

      And the bottom line is that you can pay a lot for a private rheumatologist whatever country you live in and still meet someone who didn't read the same textbook you did and you have only two choices - stay with them or go. In PMR that isn't so much of a problem, it may be very disabling and painful but it doesn't kill. It took me 5 years to get a diagnosis. GCA is another matter - delay in diagnosis CAN (though not necessarily) leave the patient blind. The diagnosis of both is difficult in many cases - there are several other things that look similar and they should be ruled out. There are no studies yet that have looked at the best way of using pred - and the doctors' fear of pred and its side effects lead them to want to get you off pred as fast as possible, the same way they use it in other forms of inflammatory arthritis - but they forget (or don't realise) that for us, pred is our DMARD. 

      It remains a case for education - of the patient and the doctors.

    • Anhaga
      Anhaga EileenH

      Posted

      There is not yet, and I hope won't be, a separate "private" medical stream in Canada, although there are some clinics offering certain services privately.  Also quite a lot of our care is not covered under Medicare so is paid for either out of pocket or through the additional insurance that many of us carry (dentistry, eye care, supportive treatments such as physiotherapy), and there is currently a big discussion going on about whether we should (finally) bring in universal Pharmacare.  Seniors in my province must pay a sizeable annual Pharmacare premium upon reaching 65 unless they can prove they already have coverage through their medical insurance.  
    • Anhaga
      Anhaga

      Posted

      An example of describe what I mean about coverage in Canada:  when my second child was born I was taken aback to receive a bill on top of what the medcare program covered.  By the time my third was born, three years later, "extra billing" as it was called had been banned in my province, and this remains the case to this day.  A doctor in this province simply isn't allowed to charge patients directly.
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