Polymyalgia and Giant cell arteritis

Cookiemonster

Hi, I was recently diagnosed with polymyalgia and giant cell arteritis. On 60mg steroids per day (and meds for high B P) I think I’ve read as much as I can about this… my main problem is finding anyone else who has these conditions together. Also diet is a nightmare as I’m pre-diabetic,high cholesterol has to be avoided and high potassium foods….
Sleeping hardy happens(3 hours at most,‘due to steroids)

Any help or suggestions much appreciated

Cookiemonster

Ellen

Hi @Cookiemonster welcome to the online community.

I quickly searched for posts by people who have Polymyalgia Rheumatica and got this:

https://community.versusarthritis.org/search?domain=all_content&query=polymyalgia&scope=site&source=community

and for Giant cell Arteritis:

https://community.versusarthritis.org/search?domain=all_content&query=giant%20cell%20arteritis&scope=site&source=community

You may have already done this of course apologies if you have.

I believe PMR can be linked with Giant cell Arteritis (GCA) so possibly some of the people who wrote any of those posts have both.

Sleep can be a huge problem when taking steroids. When someone I knew was taking them for cancer treatment they were advised to take them earlier in the day. No later than 2pm I wonder whether your own Dr could advise you?

My best wishes

Ellen

Cookiemonster

thank you for your comments. I was hoping to compare notes with someone with the same conditions, but there don’t seem to be many, and no discussions… . maybe I should have posted in the “ general ”rather than a specific forum! New to all this…

frogmorton

@Cookiemonster I think you really are rather a rare person (I know we are all special of course) so finding someone else with the same condition also still posting isn't easy.

Did you look at the people Ellen linked in and see if any are still around? If any of the posts look interesting if you put an @ before their name you should be able to sort of 'call them'? They should get an email link to your post. Worth a try.

I have a neighbour over the Rd with PMR, but that's no use to you at all.

Take care and remember we do all understand pain here whatever our condition ((()))

Toni x