PMR 101

[whitefishbay]

Good Morning All

I was lucky enough to be able to attend the meeting @ Artizan Library yesterday in London and learned lots from Dr Kate Gilbert. Glad to hear PMR & GCA are becoming of interest to researchers. I think some well known celeb or royal needs to get it for it to become a fashionable disease with money for research.

I think there should be a PMR fact sheet for new PMR sufferers. I know we need to take Adcal D3 tablets (and I didn't know I should have been taking 4 tabs per day....oops I am a dunce). However I found out yesterday we should be taking Omega 3 oil 3.5 g per day. Did you know this? Will help to reduce suffering.

What do you think? when you find out you have PMR/GCA you are usually a)suffering and b) overwhelmed. Maybe a fact sheet would help and the experts/aunties could draw one up.

Thank you for your help and knowledge all year long. Happy Easter.

Whitefish xx

[Ranchero]

A good idea. I am fairly new to the forum and I don’t know if a fact sheet has been set up before. I have heard that the Queen’s cousin, Princess Alexandra has pmr but that information has been kept pretty low key.

[DorsetLady PMRGCAuk volunteer]

Try reading this - healthunlocked.com/pmrgcauk...

[Marijo1951]

At my very first hospital appointment, my rheumy gave me two booklets published by Arthritis Research UK (now Versus Arthritis), one about GCA and the other about PMR. They proved extremely useful as an introduction to two conditions that I had never heard of before. I've just checked their website and the booklets are still available free in their shop. See

arthritisresearchuk.org/sho...

Having said that, they do not substitute for keeping in touch with this forum. I think I was just so relieved to find out that my conditions weren't unique and there was help available.

By the way, your post gave me a bit of a shock as I was supposed to attend the meeting and was really looking forward to meeting Kate Gilbert but, guess what, presumably because of pred head, I was convinced it was to be held next Monday, which is particularly ridiculous given that it's Easter Monday and presumably the library won't even be open!

[whitefishbay]

Well I got lost so I was late (just me not pred head).

[jinasc]

They did, one is Princess Alexandra and the other is the person who played Pat Butcher.

Neither of them would come forward.

[whitefishbay in reply to jinasc]

Not sure Paty Butcher would help the cause.

[jinasc in reply to whitefishbay]

Nope but I could not remember the name of the actress who played the part. And I cannot blame 'treacle brain' or 'steroid brain fog - GCA in remission 8th year. 🤔

[Hidden in reply to jinasc]

We were discussing this on the 6 six old thread. Pam st Clement. I had to look it up then

[whitefishbay in reply to jinasc]

I am just increasingly vague...my mother had Alzheimers...oh no.

[PMRpro Ambassador in reply to whitefishbay]

She was quite happy to have a 3 weeks holiday in the USA to try wacky baccy for PMR ...

[PMRCanada in reply to PMRpro]

Yes, she was. I enjoyed the special series immensely! It was the first time I ever saw anyone “famous” announce they had PMR. The subject matter was of particular interest to me. 🌿

[jinasc]

We did a booklet called 'Living with PMR & GCA' and a DVD.

[PMRpro Ambassador]

Omega 3 made no difference to me when I took out a mortgage and tried it! It is also not a recommended approach - it is something that was found in a study to reduce problems/inflammation in rheumatoid arthritis - it may or may not help in PMR. Not all inflammation is the same.

How many Adcal tablets you should take depends on the form you are given - caplets are 2x2 caplets daily, the chewable tablets a 2x 1 tablet daily. So check - too much calcium is also not good for you!

[whitefishbay in reply to PMRpro]

Thanks.