Tray.

[pmrdec112014]

My gp has rung and advised to go back up to 15mgs pred for at least the next 10 days. He says there is no rush to reduce. I feel inside my head that there is. I can see this isn't going to be a smooth journey!

[PMRpro Ambassador]

Since you have nothing better to do for the day - do a bit of reading maybe? Here are some links to websites and medical articles about PMR/GCA - you will be able to understand all of them, including the medical ones, no bother.

The website for PMR-GCA NE can be found at pmr-gca-northeast.org.uk

The forums within the NE site are here - pmrandgca.forumup.co.uk

Other useful sites:

PMR-GCA Scotland pmrandgca.org.uk

There is also a new National Organisation PMR GCAuk which covers England, Wales & Northern Ireland - now has a website pmrgcauk.com.

PMRGCAuk have a web-based community/forum on pmrgcauk.healthunlocked.com

rcpe.ac.uk/sites/default/fi... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ.

He's right - there is no rush to reduce and hallelujah for a GP who recognises that. Most of them are in far too much of a hurry. You have a choice - pred or pain and immobility. Pred isn't half as bad as it has been painted to be in the past - yes, there are 82+ side effects but no-one gets them all and many get few or even none. As pay off you will have a reasonable QOL - even if you put on a bit of weight (doesn't always happen) or get a bit moody. Both will happen with untreated PMR - believe me, been there, got that t-shirt! First of all, get over this cold. Then start again - preferably perhaps with a bit less stress?

[trish29]

Hi pmrdec112014.. I hope you are starting to feel a bit better now that you are going up to 15mg steroid .. I really feel for you when you are so young and are supposed to go out to work .. I worked at the beginning of my PMR journey but had to take quite a lot of time off with migraines and my biggest enemy Exhaustion and pain and in the end I did retire at 60.

I always seem to have to go up to my feeling better dose between 14 -15mg pred but below that I just can't move or get off the bed ..I am with a Good Rheumatologist NOW after a lot of neglect over the 11 years that I have had PMR. He cares and listens and is trying to get me down to 10mg pred but something seems to come along to give me yet another flare- up and back up on the pred I have to go .. I don't have such a good rapport with my GP and I'm a bit uptight this evening as I have an appointment with him in the morning ..at the moment I am on 14mg steroid but I want to tell him that I need to go slower after such a long and hard winter ..Like all the experts are saying to you Slowly slowly reducing .. Good Luck and get plenty of rest because that is the only thing that PMR and the exhaustion responds to ..I will be watching your posts with interest ..Give yourself lots of TLC ..Best wishes trish29

[pmrdec112014 in reply to trish29]

Hi Trish29. Thank you so much for your kind post. I am feeling better pmr wise though still have annoying cough. Amazing what just an extra 1mg can do.I despair that I will ever get lower than my original starting dose! Luckily I have been with my gp for 20 years now and do have an excellent relationship with him. He was a single handed practice until 2 years ago but even now I only need email the practice and ask him to ring and he will. Already that has happened at least 6 times and that s only been since December! I am trying to decide whether to try going to work today....My team are very supportive and I hate to feel I am burdening any of them and of course some of my work will pile up when I am not there. So there is always a dilemma. This site is such a support as this illness is such a weird one and often I feel quite alone as I am sure even my own family don't understand it ( husband exception)! I hope your gp supports you today. Good luck!