I've been wondering why we see rheumatologists and not endocrinologists. The problem is with our hormones; it's just that the symptoms show up in bones and muscles. After all you'd expect to see an obstetrician if you were pregnant, not a gastroenterologist because you'd had morning sickness as your first symptom.
I suppose we get sent to bones first in case it's arthritis or something but surely we should get referred on. Or maybe the rheumies have the expertise now (or not).
Just a thought I can pester my GP with lol...
PS You and I know who have the expertise in this field!
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queenhermione
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We see Rheumatologists as PMR/ GCA is an autoimmune disease, some forms of Vasculitis affect the kidneys so patients see a nephrologist as well.
The problem is with our immune system attacking itself, not hormones ( or am I missing your point ).
GCA is the immune system attacking its self,as far as I know it does not have anything to do with hormones , but could be another form of arthritis hence seeing a rhumy .
inflammation of you joints and giant cells in you artery's as far as I know is not hormonal, do let me know if you know different Anne
In PMR and GCA the problem is NOT with our hormones - where did you get that idea from? There ARE illnesses with similar symptoms to PMR that are due to other causes - that is part of the differential diagnosis at the outset - and some of them are due to thyroid problems or menopausal problems which do resolve with an endocrinology approach.
PMR and GCA are both almost certainly vasculitides, inflamed blood vessels, in GCA (giant cell arteritis) it is inflamed arteries (the clue is on the name), that is a certain fact, and in PMR it is thought to be in the microcirculation, the very small blood vessels that supply the muscles.
Traditionally patients saw a rheumatologist because PMR was originally called senile rheumatic gout - because of the symptoms. But in the meantime it is rheumatologists who tend to specialise in vasculitis and so we still see them although the illnesses are now known not to be rheumatism or arthritis as such. There are some who specialise in vasculitis to the exclusion of most other things - in centres of excellence - but they are not as numerous as general rheumatologists and often not local enough.
Might be an idea to buy 'Living with PMR & GCA' co-written by PMRpro - hard information, no jargon and lots of Tips and Tricks from patients and checked by Medics.
I can see why someone new to the illness and trying to understand it would wonder about the involvement of hormones. We are told it only responds to large doses of corticosteroids (prednisone), which is in fact a man-made drug closely resembling the cortisol made by our adrenal glands. Our adrenal glands actually stop producing their own cortisol when we take such large doses of the corticosteroids. It's a reasonable step to wonder if one's adrenal glands should have been producing more cortisol at the onset of the illness, or in other words, a hormonal insufficiency.
It turns out that hormonal insufficiency is not suspect in any way that we know of with these vasculitis diseases, but wondering about it seems natural to me. All questions are welcome on this forum.
Cortisol (along with adrenaline and DHEAS etc) is one of the gang of hormones, plus antibodies and other little bits and pieces in our cells such as cytokines, behind our dealing with inflammation. It's part of the amazing way our bodies work to keep us healthy.
For example, you get a cut and adrenaline kicks in. This is turn activates cortisol to switch on the healing process and everything else comes rushing along as well.
However, sometimes this all gets switched on too high, (for me, I reckon, far too much work stress and then a torn rotator cuff to finish it off), gets stuck and leads into things we don't require thank you very much, like our making too much Interleukin-6, which can result in autoimmune disease. (Very simplified but I think generally on the right track).
Cortisol is a corticosteroid hormone we all make in our bodies. Prednisolone is a synthetic corticosteroid drug, with some of the characteristics of cortisol. It takes over from the adrenal glands so that you don't produce your own cortisol until you reduce the dose right down to around 5mg - 7.5mg. (By which time, I suppose, your adrenal glands have calmed down again)
There's an interesting bit of academic research here that shows the link between raised IL-6, hormone levels, pmr and corticosteroids.
No-one thought any different - and all questions ARE welcome.
But the point is that you need an excess of the immune suppressant stuff to calm down the immune system's malfunction. It's a bit sledgehammer to crack a walnut but that's the way it is. No-one knows what it is that is the mechanism, WHY it all goes wrong. So you manage the symptoms until someone has a brainstorm and identifies why. Most autoimmune disorders are the same - they don't know why. In RA they do have a few biologics - but they don't work for everyone and for some people none of them work, hence the practice of starting at the top of the list and working down rather than jumping straight to bottom of the list.
In the context of PMR, the stress bit is not because it makes more cortisol (it does) but because stress affects the immune system somehow and at some point it malfunctions and goes haywire. You are using the pred to suppress its action so it doesn't attack your body by mistake which relieves the symptoms. It isn't doing anything about the real disease - just like Lemsip soothes the effects of your cold/flu until it dies out.
Queenhermione, your description seems to explain why so many of us fall ill with PMR shortly after experiencing an event of some kind which triggers that cortisol production, with additional stress of some sort making it carry on, like a car uselessly spinning tires in mud or snow. Our treatment stops the tires spinning but it doesn't get us out of the mire. Only the passage of time dries up the mud or melts the ice so we can get out.
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