PMR & GCA
Posted , 13 users are following.
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
judy20492 kimberly04963
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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 judy20492
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Crystalcave kimberly04963
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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 Crystalcave
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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 kimberly04963
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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 EileenH
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EileenH kimberly04963
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Silver49 EileenH
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artfingers kimberly04963
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kimberly04963 artfingers
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Anhaga kimberly04963
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kimberly04963 Anhaga
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snapperblue Anhaga
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kimberly04963 snapperblue
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tony09890 kimberly04963
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EileenH tony09890
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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 EileenH
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Anhaga
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