pmr

Hi Karen - you've had most of your questions answered so I'm left to explain the stupid badges and do the advertising! The site was revamped a couple of years ago and the company that did it decided to "encourage" participation by introducing this very US concept of collecting badges (despite being told it wasn't particularly appropriate)! You are awarded points for various activities - starting a thread, answering a post, being on the site and posting so many posts a day/week whatever, being there every day - all that sort of thing. The daft thing is that someone who joins mltiple communities and posts something like "Good morning" and nothing else to every post they read collects points and soon gets to be described as "expert" when actually they don't really know much or contribute meaningfully. 

Anyway - back to sensible stuff! You say you feel awful - why do you feel awful? Have you still got symptoms that aren't improving? Tell us more about that and someone will try to make suggestions to improve things. 

The pred won't make any difference to the fatigue - that is the underlying autoimmune disorder that causes the symptoms we call PMR and it also leaves your muscles intolerant of acute exercise - so as well as managing the pain and stiffness with pred you have to do your part by pacing and resting appropriately.

There is a whole post about that here:

https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

If you go to this page:

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

you will find alist of all the threads in this forum - you may see some that interest you.

On this page you will find a load of links to information sources that are reliable:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and in the replies part of the thread, if you scroll down a bit, you will find a slow reduction plan that has worked well for many people and is now being used in a clinical trial in the north of England. 

Your doctor's estimate of a year and half is very optimisitc I'm afraid - about a quarter of patients are said to get off pred in under 2 years - and they are more likely to have a relapse at some later point. About half take more like up to 4-6 years. And a few of us take even longer   I have had PMR for about 12 years now, have been on pred for 7 years. I've been down to 5mg but recently had another flare and was back to 15mg and am on my way back down again. However - I am well providing I take the right dose, have no pain or stiffness and am able to do most things. I recently travelled alone from northern Italy to Vancouver for a conference and next week am heading back for another 4 weeks of Canada and the USA on holiday and then another scientific meeting, though this time with my husband. The first time I did it all myself and was fine, this time we have a transfer in Chicago and have requested assistance - it's available and free so why should I worry about standing for hours at immigration and then dragging my case miles in a VERY large airport if I don't need to!

The pred has done no damage I know of. Any damage I have was due to the autoimmune part of the PMR - it also caused atrial fibrillation. PMR made me put on weight - pred then redistributed it to the usual places, but I have also lost it all again, despite being on pred. It can be done and I'm not the only person to have succeeded.

In the 7 years on pred, I have only taken calcium and vit D - on the basis of a dexascan that showed no need. Four years later a repeat scan showed a similar result - no change due to pred could be identified. It doesn't always happen and I wouldn't take alendronic acid without the proof there was a need. It is recommended that alendronic acid should only be taken for 5 years without a holiday from it - it has some a few very severe potential side effects which can appear sooner - so why take it if you don't need it? 

Where do you live? If you are in the UK maybe there is a support group near to you - and they are to be recommended. The NE of England has a particularly good website - the link is in the post I gave above - and they have a DVD and a booklet about living with PMR and GCA for sale. There are articles from others with PMR and GCA on the website. If you are in the US, Canada or Australia there are others on the forums (there are 3 in the UK) from those countries - no support groups yet as they are rather spread about but if you say whereabouts you are maybe there is someone not too far away. And the NE group ships their goodies all over the world!

You will stop "freaking out" about it with time - accepting this is a new phase of your life and adjusting to it rather than trying to fight it will help. There is no point wasting energy on being angry and fighting something you cannot change - use it to live better with PMR. Holistic therapies may help - they will NOT replace pred successfully. They may help you get to a lower dose, although there are no promises, and they may well make you feel better. But do not believe anyone who tells you they have a magic answer to PMR. They only want to transfer money from your bank account to theirs...