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Polymyalgia rheumatica

(13 Posts)
lostmyspecs Thu 25-Jul-19 18:43:15

I have been diagnosed with PMR a few weeks ago after a horrendous three months of extreme muscle and joint pain which completely disrupted my life. A few weeks ago I was started on corticosteroid ( Prednisolone) which controlled this pain very quickly and I am on regular reducing dose for the next few months at least. However, I have recently realized that this condition may have to be managed for a long time with constant blood tests and monitoring and I would be very grateful to hear from other sufferers how they cope with it. Any tips for best management would be much appreciated.

shysal Thu 25-Jul-19 19:44:16

If you do a search for polymyalgia at the top of the page you will find several previous threads on the subject which you might find helpful.
I was a fellow sufferer but don't think it was a severe case as I was able to cope without the steroids, I just didn't want them in my body. The condition lasted about 2 years if I remember rightly, which I think is about average, although it lasts much longer for some. At least it is self limiting and will eventually go away.
In my case I went on to develope Rheumatoid Arthritis, which will be for life. Hey ho!
I am sure you will receive lots of comments on your treatment, there a a good few sufferers on GN. I hope you make good progress.

lostmyspecs Thu 25-Jul-19 20:11:38

Thank you shysal. I have followed your advice and have now ordered a book recommended by another GNer. I think it will,be helpful for my husband to read this too as, although he is very supportive, we are both a bit bewildered by the massive changes to our lifestyle this year. I am fairly new to GN and don't post much but think some of the advice is excellent. Thank you for getting back to me.

Iam64 Thu 25-Jul-19 20:33:54

I have RA and medication/disease has meant regular blood tests as part of monitoring for nearly 30 years. It isn't that intrusive, you just get used to it and don't worry x

Callistemon Thu 25-Jul-19 21:05:18

Someone close to me was diagnosed with this and she was crying with the pain of it. The GP prescribed steroids which did cause some bloating, but also prescribed an exercise course run, I think, by the NHS or LA (not sure which). She chose walking and swimming.
Two years on and she is so much better; I am younger than her but can't keep up with her. She's no longer on medication btw.

annodomini Thu 25-Jul-19 22:09:50

I was diagnosed with PMR eight years ago. The blood test was conclusive as was the very quick reaction to steroids. My inflammatory markers took a long time to reduce to a normal level, but it's now two years since I took my last prednisolone, though it seems my CRP may never go right down to normal owing to another auto immune condition. I got a great deal of help from this web site www.pmrgca.co.uk/content/home-page
and strongly recommend this book:
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.by Kate Gilbert PhD available you-know-where.
It's good to pass on this book to your family so that they know what you are going through, though you may look quite normal.

lostmyspecs Thu 25-Jul-19 23:41:18

Thank you annodomini, you will see I have ordered this book and hope that it provides the information I need to manage this condition. I have been so worried about what is happening to me and am so grateful that others are willing to share their experiences of this condition with me. I too was diagnosed because of rapid response to steroids and so far having reduced from 20mg to 12 mg daily I am still pain-free. I hope to understand more about the condition from the book as I have always been healthy until now and am, I guess, scared to have something going on in my body which is alien to me.

NanKate Fri 26-Jul-19 07:36:10

Morning Lost

I have had PMR for 3 years. After 2 years I thought it had gone and stopped the Prednisolone. Then the illness zoomed back and I am back on steroids.

Some people gain weight on steroids, not all, so I would suggest you keep an eye on your weight.

At least this is an illness with an end.

I would also suggest you keep moving.

Best of luck.

Grandmashe43 Fri 26-Jul-19 17:12:54

Im newly diagnosed with PMR and taking Pred, I echo annodmini and the PMR/GCA forum is extremely informative.
It’s not a nice illness and pacing yourself seems the best thing you can do. Not easy, and in my case it’s been painful.
Wishing you good luck and bless the Pred (so far).,

lostmyspecs Wed 31-Jul-19 14:17:06

Thought I'd update everyone who answered my original post to thank you all again for your advice. I bought Kate Gilbert's book and am finding it really helpful. I have also subscribed to the PMRGCA.uk forum and am finding even more information there. I am reducing Pred on a weekly basis at the moment but was unaware that I may soon experience pain again which might require upward adjustment. I think I have been in a bit of denial about this condition but now that my eyes have been opened I am ready for the fight! Thanks for your good wishes Grandmashe43, and I echo - God bless the Pred!

NanKate Wed 31-Jul-19 16:37:15

The advice I got was to reduce the prednisolone monthly, weekly may be a bit too soon.

lostmyspecs Wed 31-Jul-19 19:00:06

At the moment I am following my GP's instructions and am seeing her 6-weekly so next appointment is not until 5 September. If the pain returns between now and then I will certainly increase the dosage (as instructed by my GP) but would then raise the subject of reduction with her to try to clarify why instructions in that regard are not standard. I am still "feeling my way" with this situation but do appreciate you getting back to me and, having noted your advice to keep moving, did some weeding today, four separate sessions of 20 mins. which was manageable. Yesterday I managed to confront the fairly steep hill to my home after doing some shopping in town. I will certainly take heed of your advice as my instinct is to keep moving. Many thanks.

HannahLoisLuke Fri 09-Aug-19 10:37:28

Ive just been to GP with all the symptoms and am currently waiting the blood results.

Relieved that what I'm suffering from actually has a name and a treatment.

Will I get a balloon face and neck from steroids?