Doctors!!

[ChrisinNam]

I've just noticed on a post by Kendrew that PMR was mentioned as a "Life Changing disease". When I was first diagnosed, last year, I said to the doctor, "This is a life-changing thing". His reply? "No it isn't!"

How on earth does one deal with that?

[Kendrew]

Hi there. It's always a challenge when the patient appears to knows more about their condition than the medical practitioner!! Unfortunately, your doctor is wrong! PMR is usually a 'manageable' autoimmune disease, but it definitely has a big impact on our lives. I for one have had to give up work, and many of the physical activities I previously enjoyed are no longer within my current capabilities. I think your GP needs to be shown some of the information accessed here that will explain some of the daily challenges we face. He clearly doesn't seem to be fully up to speed on PMR.

I would be asking him on what basis is he able to say that it's not 'life-changing'. I'd also ask him how many other patients with PMR has he treated! We are all completely within our rights to ask as many questions as we wish, providing it's done respectfully.

Probably the most helpful thing you can do is learn as much as you can yourself about the condition and look at FAQs on here.

[Doraflora in reply to Kendrew]

Kendrew: how is your uratica? (I’ve not spelt it right - sorry!).

I smugly said mine had cleared up miraculously with the fexofenidine, so I stopped it after 10 days, but guess what?? Yep, I’m back on the med.

Tbh, I no longer have an horrendous rash, just odd little itchy patches, but thought I’d better stay on the antihistamines a bit longer this time.

[Kendrew in reply to Doraflora]

It's significantly improved thankyou, but like yourself, it's not totally gone. As soon as I finished my 5 days on 30mg pred and dropped back to my 6mg, it began to worsen again. I've now been on 25mg for 5dys and will be reducing 5mg every 5dys till back to dose I'd currently been taking. Also taking the two prescription antihistamines prescribed by GP. I seem to have pink 'blemishes' that come and go where the rash was worst...forearms, chest, top of inner thighs. More visible after shower/bath and then fades again. No raised patches though. Fingers crossed it continues to diminish. Hope yours clears up too.

Thankyou for asking.

[Charlie1boy]

Well - it most certainly changed my life!Paddy

[Constance13]

That's easy! Change you doctor.

[PMRpro Ambassador]

You could excuse him as he hasn't had it and only knows what the textbook tells him: it lasts less than 2 years and is well managed (which he reads as cured) by low dose pred. However, as I have just said somewhere else, it is slowly being realised that it ISN'T a short term and simple illness for the majority - only about a third are off pred in 2 years and there are some patients for whom it is life long and much harder to manage.

It's why some of us are here - to spread that word and educate doctors as well as patients.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Patients - easy to educate; Doctors - I'll take a rain check on that if you don't mind!...although some more open to learning than others!😉

[SnazzyD]

😂 Really!? “Ah doctor, do tell how you work that one out”. Having seen countless consultants for varying things over the years, I can count only one who asked me how is am, really am and they weren’t a Rheumatologist. If I’ve ventured further to try to tell them all is not sunny in my camp, there followed the sort of, does not compute response,leaving me feeling it’s just me. How hard is it?…..

[PMRpro Ambassador in reply to SnazzyD]

Very, it seems!

[cycli in reply to PMRpro]

I am very fortunate in that I have a GP who genuinely cares. She may not get everything right but she is working my condition out gradually and trying to work out the best approach. Rare. The rheumatologist is not just a waste of space but a risk factor in my opinion. I'm seeking another. Any consultant who doesn't include the patient in the process is surplus to requirements.

[PMRpro Ambassador in reply to cycli]

I agree