Polymyalgia

A friend was diagnosed with PMR and has been on steroids - her GP also prescribed joining a walking group (a couple of gentle miles a week), swimming and an exercise class. She has put on weight - however, for some reason she stopped going to WW when she was diagnosed which I wondered if she should have continued as she has put some weight on.

Is this on the increase or is it that GPs are more aware of the condition these days? I have heard of quite a number of cases (perhaps I should get tested myself, although my pains are more in my joints).

In my case I had a perfect storm, steroids plus a thyroid problem, so I can't really answer your question. In the short time I was on steroids I did put on weight very quickly, but in all honesty I don't recall having an increase in appetite. It took me ages to get the weight off, so my advice would be to buy a smaller dinner plate and watch your weight from day one, also keep up whatever your exercise regime is. Some people who knew me did ask if I was on steroids because I developed a 'puffy' look to my face.

It's only in the last year, since going on a low carb-high fat diet that I've lost all of the weight and kept it off.

A great outcome GA.

Now to my next question why do people put on weight who are on steroids?

It took me a long time to lose 3 stone and I have mostly kept it off. I dread becoming my old porky self again. Do the steroids increase appetite or does the weight go on and you can't do anything about it ?

NanKate at its worst I was unable to lift my arms and climbing the stairs was like attempting Everest, but over time the symptoms lessened until one day I woke up and realised I'd beaten the beggar!!

Thanks GA at least there is light at the end of the tunnel. A number of people have mentioned 2 years for the illness. Glad you have had no relapses.

NanKate I had PMR and the steroids worked like magic, within two days I was completely pain free and full movement was restored. Unfortunately for other medical reasons I had to be taken off the steroids and it then took two years for the PMR to go. No relapses since though.

Thanks I will research that book Daddima*

I have Giant Cell Arteritis, and am currently reducing my dose of Prednisolone ( steroid) I'm down from 60mg to 10mg, so hope to be rid of them by autumn. I found this book helpful;

Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide,
by Kate Gilbert

Oh I forgot to mention a related condition, Giant Cell Arteritis. Only a small percentage of PMR sufferers also get this, so don't be too alarmed. But you should be aware of the symptoms so that you can get to your GP quickly if you think this might be developing.
Here's a link to more info on this
Good luck

Appreciate the hug * Kitty*.

Megran I am on Facebook so will check it out.

Indinana what a helpful and positive email, thanks so much.

I am just coming out of this condition. It's odd, and the medics don't know why, but it often lasts only 2 years or so with steroid treatment.
Once you're on the steroids there will be an almost magical transformation - all your aches and pains will disappear very quickly. I was pain free within 48 hours. But you have to remember that steroids subdue all pain, not just that caused by the PMR, so when you eventually come off the steroids, or when you have reduced the dose dramatically. the normal arthritic pains will return.
You will also have to take calcium and vitamin D tablets daily because steroids increase your risk of osteoporosis. Ask for a bone density test to see the condition of your bones now. I had one at the beginning and another a few months ago and my BD has been fine throughout.
There are possible side effects from the steroids just as there are with all drugs. Make sure you read the info leaflet thoroughly. The worst side effects I've had are weight gain (but it doesn't take much with me - I do like my food!) and an increase in sweating, mainly through my head - while on higher dosages (8-15mg), I would suddenly and for no apparent reason feel sweat trickling down my face and neck. I grew my fringe out because it was frequently getting drenched . Since I got the dosage down to below 7mg this side effect has gone.
Please don't worry, you will probably be absolutely fine and it will be so wonderful to be pain free!

Sorry to hear this NanKate. A close friend of mine has Polymyalgia Rheumatica and I know she has gained a lot of useful information and support from a Face Book group. Even if you aren't on Face Book, maybe try doing a search and see what comes up. Good Luck and a few wobbles are allowed!

Sorry to hear this NanKate. I have no knowledge or experience but I'm sure someone who has will be along soon.

Have a very gentle ((hug)))