Polymyalgia rheumatica

I got PMR during Covid lockdown. The pain was unbearable and I couldn’t see a doctor but I soon diagnosed myself from Google. I informed the surgery and got started on Prednisolone and had treatment for nearly 2 years, all without once being seen by a doctor.

I've just been diagnosed with Giant Cell Arteritis because of a headache but they also picked up my recent aches and pains were caused by PMR - all pain went away when I started on 40mg of Prednisone last week. I was put on steroids immediately as GCA can cause blindness if left untreated.
Saw a rheumatologist within a week and now on 2 weekly blood tests. I had posted about my GCA but didn't realise until yesterday that I also had PMR.
Now off to order the book that was mentioned!

When I had PMR I was reluctant to take steroids so declined them. However, I later went on to develop rheumatoid arthritis.
I have always wondered whether allowing my body to put up with the PMR inflammation caused this. My rheumatologist could not say.
Given my time again I would take the steroids. Apparently they make you feel so much better!
Good luck! Hope your recovery is good.

thank you for your reply. I am hoping that I will be able to stop medication within a year like you, gingers crossed

Nellflanders I had Polymyalgia about 6 yrs ago. Started on 15mg prednisone, which is NICE guidelines. After the medical guidelines of the tapered steroids, I recovered fully within 12 mths. Be reassured , you can be positive of a good outcome.

At 75 I have recently been diagnosed with PMR and am currently taking steroids 15 mg daily,2 which has been miraculous in stopping pain, but there is so much scary negativity about them I am hoping that someone may offer reassurance that they are not that bad..

My man had polymialger rhuematicaHe is better now and after about 6 months is back to normal thank god.
He is 80 years old .healthy slim non smoker, rare drinker.
Suddenly his legs suddenly collapse and he goes down. He is fine before and also after it has happened. It has happened three times in the last few days.. not keen to go to doctors as he thinks they will say ,your 80 what do you expect. Will they? Any ideas.

Pain in my shoulder was originally diagnosed as rotator cuff, but after some weeks when pain spread to other shoulder, hips and buttocks, a friend who is a nurse suggested I get tested for PMG. After blood tests it was confirmed and I am now on Prednisone, 4 tabs a day. Pain has gone but feel spaced, tired and generally off. I eat a balanced diet and conscious of eating anti inflammatory foods.
I do not fancy being on on steroids for 2 years and welcome ways to reduce dose and alternatives.

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?

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.

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

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!

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).,

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.

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.

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.

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.

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

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.

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.