Thank you for this group where I’ve found answers and support when I can’t even get through to my GP surgery.
I was diagnosed by a rheumatologist in July 21 (after my GP flatly refused to believe I had anything other than menopause problems) and started on 20mg Prednisolone with a tapering programme.
I’ve been up and down but I’m down to 5mg. Still have some pain and other side effect but just recently I’ve experienced terrible hot flashes in my face. Last night it happened while I was out and it became so annoying when just about everyone commented on how red my face was.
Is this something that happens with this whole PMR thing or should I be worried? I’m 61 ( in a few weeks).
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Earthangel59
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Now you have posted, you can see related posts - either in right of screen - or below posts depending which device you are on.. but it is quite a common symptom of PMR.
But the fact that you seem to have been ‘up and down’ with meds and still have some pain would be of more concern….doesn’t sound as if you have control of your PMR….
Time to escalate a complaint to the practice manage for a start. They MUST ensure some form of access to doctors not just say "no appointments" when you are dependent on phoning to get one. Google "how to complain about a GP" for details.
Some people do have flushes with PMR. It doesn't seem to be a recognised symptom of adrenal insufficiency. However, the expert view is they need to be looked at and obvious nasty causes ruled out. It could be a combination if factors if they weren't a problem before - you say your GP was insistent your problems were menopausal?
yes and I’m on HRT. Have been for several years. This has only just started and my rheumatologist said being on HRT was a good thing for protecting my bones. My last dexa scan last year was good. No osteo problems showed.
My Inflammation levels on my last bloods in September were good too.
my rheumatologist wanted me to be down to 1mg by last September but I couldn’t do it as I had a huge flare so she put me up to 5/4mg (5mg for a month then 5mg on alternate days with 4mg )for two months then 4mg until I see her again (supposedly this month) but I’ve struggled on 4mg so I stuck with 5mg where I still am but I’m sure it’s not enough.
Oh dear - someone who doesn't get that GCA writes the tapering rules, not her. If it is still active - you need enough pred. And GCA is more like a 4 to 5 year journey than the less than 2 years she appears to espouse.
As Dorset Lady advises, do ring the rheumatology secretary. You should find that number when you Google the department. It’s frustrating to say the least when a problem plays on the mind and the GP can’t be reached but you’d be better served anyway to speak to someone who isn’t so dismissive. Best wishes.
I have had this symptom and it was pretty short lived with me. I was thinking that you maybe of interest to the endocrinology department. You are moving into the Adrenal insufficiency area with a dose of 5 mgs, your Adrenals will be noticing a lack of cortisol. You are also on HRT that may have an impact. My Endocrinologist was keen that I came off oestrogen cream while he tested my Adrenal function. So it is clearly interlinked. My GP has become fairly inaccessible too but they were amenable to referring me on. I was once advised to re-dial every two seconds to get through on a busy line. It has worked for me, starting the moment the surgery opens. Good luck!
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