I've just been Googling for some evidence of stress being a factor in relapses/flares and came across this, quoted directly from the NHS website. Couldn't resist posting on here!"Most people with polymyalgia rheumatica will need a course of steroid treatment that lasts for 12 months to 2 years to prevent their symptoms returning"
nhs.uk/conditions/polymyalg...
It's also news to me, that taking pred for 2 years can stop your symptoms returning!! I.e. it's effectively a cure?!
Quite. I have no idea who writes some of those pages but the PMR variety are a waste of someone's time and money to pay for them.
The NICE CKS info does a bit better which shows it’s inconsistent. Not surprising some doctors think the 2 year timeframe is true.
“Treatment for 1–2 years is often required, and some people may need low-dose corticosteroids for several years.”
🙃🙃🙂🙂
It's not surprising thing go awry is it. Hospital doctors missed mine entirely, my own surgery, temp doctor, picked it up as soon as they saw my hospital blood test results, which was then upgraded by my own usual doc. Not one of them has/had ever mentioned a time frame. Perhaps we/the forum could offer to rewrite the NHS pages.
Absolutely absurd isn’t it? My ‘own’ GP never saw me when PMR started, she simply kept advising me to use ibuprofen gel, and prescribed codeine over the phone (admittedly we were in Covid times but I did need to be seen). It wasn’t until my husband called 111 in desperation that I finally got blood tests and was diagnosed by a locum.
When I got headaches, jaw pain and blurred vision, my ‘own’ GP quite fairly referred me to A&E. But I still hadn’t seen her and the rheumatologist I eventually saw gave me the 1-2 years spiel as well as putting me up to 40mg. No wonder I was confused….
I can’t help but feel that PMRGCA isn’t accorded much ‘status’ in the health hierarchy, and that so many of us suffer for it!
Thank heavens for this forum 👏👏👏xxx
Your experience seems to be fairly normal for many in the forum. My post wasn't a whinge about my doctors, who have been brilliant right through, more a comment on the NHS info which is completely out of sync with the reality for most.
Excellent idea
that’s what I was told 16 yrs ago , and it’s still going on.
Doesn't it make you mad?! My rheumy has told me that my PMR should now be gone. I've been seeing him for 4 years and he's only just twigged!
Same. At the two-year mark, she said "you probably don't even have PMR anymore, if you ever had it in the first place". She's lucky it was a phone appt. She is not the one who first diagnosed me with PMR and I think it's a huge problem for her ego. Haven't heard from her at all since beginning of April. No follow-ups no letters. I think she's fobbed me off by now and that's not a bad thing.
Good suggestion to offer to rewrite. Would this be possible?
Paperback now available via Amazon
Stuffed but working on it.
