Realising that there are different types/strains of PMR, how does one tell the difference? Is it the longevity or are there other criteria?
My PMR continues to rumble on,3 .5mgs now after nearly 6 years so am getting (with help from you wonderful people) quite knowledgeable,at least with my own situation,but have been wondering about the above.
Also had aching calf muscles but think this may have something to do with completely flat summer shoes. Now changed to pair with slight heel. Fingers crossed 🤞
thanks and love to all
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Poshdog
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I think we all agree there probably are different types of PMR - but how much study has been done on the subject not sure. But I know someone who will!
The length of time it takes to diagnose seems to lead to a prolonged and seemingly a more difficult journey with it.
If patients have other health issues, I would guess that may not help either -but that’s just my view.
No criteria that I know of - it is still a very new concept and acknowledged by only a small number of expert rheumies. My own opinion is based on what I have seen on the forums over the last nearly 13 years - more if you count the back reading I did on the patient.info forum where I had read every single post starting with when they had founded that PMRGCA discussion group before they had their various revamps where many past posts were lost.
If you look outside the UK and USA, there are a lot of patients like you. My own rheumy here says he has many patients who have been on pred for a long time - but no others on as high a dose as I needed. The 2 year myth is English-speaking - the rest of us meet rheumies who are quite laid back about patients needing pred for 4, 5 6 or more years.
Really long or high dose requirements seem to go with a delayed or messed up diagnosis, especially repeated flares because of forced reductions.
many thanks to both of you above. My diagnosis was only a little delayed, first sent for lung x-ray as pneumonia suspected after very high inflammation markers, but when results were negative very clever GP said PMR and, not so clever, it will only last 2 years!
one light at end of tunnel, it was indeed flat shoes that have been causing calf ache, just walked all around Bath in sunshine and not a murmur from calves (calfs?). All too easy to blame PMR for everything even though it is my first suspect!
present Belgian lady GP not at all phased by duration.
much appreciate both responses and one day more light may indeed be shed - not holding breath though!!! 😅
PMRpro there's a topic you and I have discussed on a few occasions, the bioavailability of prednisone. Very early on the fact that some may only absorb as low as 50% of the medication has intrigued me and I'm fairly convinced this may be a factor in my case.
An initial dose of 20 mg, increased to 25 mg, followed by a massive melt-down, resolved by 40 mg in a matter of hours may be evidence of that. Also, the fact that I had to start reducing by ,5mg at 18 mg and struggled with deadly fatigue when I got to around 12 mg (twice) also makes me suspicious.
There is very limited research to be found, and I haven't been able to get any up take on the topic with any of the many GP's I've seen, the one rheumy I saw (and dropped like a hot potato), the one endocrinologist I saw, or even my brief mention of the topic on one on the PMR webinars.
I continue to wonder if this is the issue, not only for me, but many other of the long timers???
I think it maybe part of it - or maybe not the amount we absorb as such but the availability of prednisolone receptors on the cells. Some doctors insist the blood levels are fairly similar despite the lack of effect. Can't remember where I saw the bit about receptor.
I'd have to renew my subscription to get the full copy, which I'm not interested in doing at the moment. If you're a member, perhaps you would like to have a look. If not, I'll renew my subscription for a short time later, I'm travelling and visiting for the next two weeks so won't have the time to make proper use of it.
I know - that appears to be the assumption - so that is where the receptors availability comes in. But I have seen articles that talk about bioavailability varying.
Thanks to all for your interest in this. I know PRO has much more of a scientific mind than I do and I suspect nuigini has too. I shall do my best to hang on in there. x
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