Polymyalgia Rheumatica

I'm another GN member with autoimmune arthritis. I was diagnosed with Stills Disease when I was eighteen months old. This was me a year ago - phyzzezee.wordpress.com/2011/12/07/new-beginnings/. I need to write an update soon

I used to have that book trishs. Someone borrowed it and I never saw it again. My physio recommended it to me as it had helped her with psoriatic arthritis. Can we have a preview of your update? Has your condition improved noticeably? As far as PMR is concerned, it should fizzle out after about 2 years unless you're really unlucky. Mine is a lot better and I'm tapering the steroids. Sometimes feel very tired though - like now!

I was at orthopaedic clinic yesterday for a review. Although I was offered a joint replacement for my second knee about ten years ago I'm ~making it last~ so I just ask the consultant to keep on an eye out for anything really untoward happening with either knee that might make surgery unavoidable. I had my usual set of xrays, and as usual thought it best to advise them about my existing antique implant which requires a larger picture area than the more modern nifty little knee prosthetics. Then, instead of seeing the consultant, I saw the clinic sister who explained that she was acting on his behalf and that all looked well but that he himself would be scrutinising the xrays during the next few days in case she'd missed anything. I do wish we were able to get copies of the xray pictures though. Mine always engender amazement and disbelief as to how I'm still managing to walk about ;) The main thing is that the cement seems to still be doing its job, despite the fact that it has already lasted much longer than they anticipated back in 1985.

To sum up though annodomini yes, I think my overall ability to cope with this disease has improved. I'm certainly feeling much more positive and healthier than I was when I began my year's trial. I haven't stuck completely with the regime in the book and the differences will be part of my blog update. Fatigue for me too is a daily visitor. I find that if I go and lie down flat and totally relax for ten to twenty minutes I get my energy back; sometimes three minutes is all I get if the doorbell rings at an inopportune moment, but even that is better than nothing.

Just over three years since I started on pred. for PMR. Now down to 3mg.

JessM I have been unable to find your book in Amazon Kindle Store. What is exact title?

Well done for that, Petallus. Isn't it frustrating when you'd really love to see the back of those little white pills!

www.amazon.co.uk/Your-Intelligent-Immune-System-ebook/dp/B007P3NPKM/ref=ntt_at_ep_dpt_1

I didn't really know much about PMR until I started reading this thread and did some googling. I was on prednisolone when I was a child, for short bursts when I had my knee op and also for my eye condition for many years. I'm so glad I don't have a need for it now and I wish those of you who are having to take it a full and speedy recovery back to health without it.

I am just reading through this lot after feeling a bit hypochondriacal.

Over the last 2/3 weeks I have have been suffering increased pain in my shoulders and upper arms particularly at night. There is no good reason I can think of, such as having been doing a lot of heavy work.

I went to my knitting group today and when I got home the muscles in my arms had become really painful and twingy. I have been knitting for the last two years with no such problems.
I am now finding it difficult to get my arm into my coat sleeve and pick the kettle up at times. My already arthritic thumb joints are more painful than they have been for some time.

I have been aware of PMA as my mum had it. I had surgery for a parathyroid problem two months ago and I am on Alendronic acid to improve my bone density problem that has been caused by the parathyroid problem. The Alendronic acid can cause pain as well. I sort of suspect PMA and I am wondering if the disruption of the surgery and the endocrinology of that might have set my body chemistry and immune system awry.

I intend to get my butt to the GP next week If I can get hold of one of the two good GPs.

How have others with actual PMR found it started with them? Has anyone else had the achy upper arm and shoulder problems?

I tried looking at this thread earlier and my computer locked for about 2 hrs. I could not switch it off or anything! I though my lovely lap top was a gonner! Very Very frightening.

Just bumped this as It was posted late on!

Nelliemoser (((hugs))), if you can cope with one. Pain can be so debilitating. I can't offer any advice but maybe this will bump this so that someone else can.

Polymyalgia sufferers, we are in good company. It's interesting that it takes a well-known person to give this illness any publicity and yet so many of us have it and sometimes GCA.

I don't have PMR (I think?) but over the last few days my ankles and feet have been so painful, I've used my luggie everywhere on board where I would normally have used my crutches!
I think tomorrow I'm going to have to get Gary, the Gardner to get my wheelchair out of the garage for use in the house!
I don't normally moan a lot about my pain but this is getting silly!

Nellie and Galen

I'm wondering if I have it too. Both hips are agony a lot of the time but if I lie on the right one, particulalry, the pain is excrutiating.

My elbows hurt if I rest them on the arm of the chair and the muscles in my upper arm are painful to the touch, as are the ones in my thighs.

I keep putting off going to the GP because I'm not keen on taking steroids since, among other things, a friend had an really dreadful reaction to the ones she was given as part of her chemotherapy.

There are other diagnoses. Such as ME, CFS. These are not treated by steroids!

As I said somewhere above, I have had PMR for 4 years. I've just had a flare up and it's been really painful in spite of upping my dose of Prednisolone to 5mg per day. I think it's just beginning to settle down again.

I would always recommend going to the doctor. There is a blood test which will help to identify whether you have PMR or something else.

I have had few adverse effects from the steroids, although not sure how the bones are doing, and it was worth it. I would have been bed-ridden half the time without it.

I am glad this has come up again. Following blood tests about 3/52 ago, my ESR and CRP were normal. I waited for blood test re vitamin D; that was normal so that has ruled that potential cause out.
The pain and twinging in my arms is still waking me up at night between 3and 6pm. Yesterday I had a choir concert and I was holding up my music folder for 5hrs during the afternoon and evening, hardly doing strenuous lifting. Arms were hurting horribly by about 4am in the inside arm muscles and woke me up. Whatever type of stuff I do with my arms my arm muscles seem to hurt accordingly. Knitting seemed to get the top of my forearms.
I have not had any of the stiffness associated with PMR though, just pain particularly twinging at night which improves slightly with gentle movement and another hot water bottle.
Right now I am in limbo as far as any diagnosis is concerned. It could possibly be caused by taking Alendronate for osteoporosis. The drug leaflet lists it as a common side effect. Has anyone else taking osteoporosis drugs had this problem? Thoroughly fed up!

If you suspect your symptoms are PMR, please see your GP. If untreated it can result in Giant Cell Arteritis which endangers your eyesight. It's not worthwhile holding off. If you don't believe this, have a look at some of the posts here.

Anno I am not going to ignore it. I am going back to see the G|P soon anyway.

Could be fibromyalgia? Get him/her to check trigger points?

I've been in quite a bit of pain this last month with a PMR flare-up. ESR up to 40.

Doc wants me to up the Prednisolone to 10mg.

Somehow I haven't been able to bring myself to do it. I've been on 4mg for the past 2 years.

But the pain is getting me down and I have difficulty walking, especially first thing.

Anybody else had this dilemma of pain versus increasing medication which has such dire side-effects?

I did have a flare about 18 months ago and increased the pred for a shortish time, came back down gradually. If your ESR is up that far, you should really take the GP's advice. It's not worth suffering the pain and the inflammation - and the risk of developing GCA - may not go away without the steroid treatment. Unfortunately the pred is the only effective treatment. I feel for you, petallus. I'm on 2mg and still have stiff shoulders in the morning.

Thanks annodomini.

I think I will increase the dose. It will only be for a few months if all goes well.

It's disappointing though. It's been four years now and I was expecting to get over it in 18 months

You've done well, getting down to 2mg by the way.

Anno - you must have improved so much since you started this thread - you managed a good hour's walk with me in Italy in May, and we had lots of long drives, sometimes over unmade roads. I hope you were not just being stoical!
It has been hard to watch my sister this week, struggling to get up from a chair. She has angina, osteoarthritis, osteoporosis and scoliosis. The latter has caused some of her lower discs to become distorted. She has been on steroids, but they gave her severe palpitations. Her legs and feet are so swollen that I have to help her on with her sandals. She has little blisters on her legs, which seem to baffle all the doctors she has seen.
She really wanted to visit a special garden in a medieval village last week, but it was located just about 20 yards down a slope and she said she could not face walking back up the incline. I have been driving her to spots with beautiful views, for picnics, but of course many of the most spectacular views are accessible only with a short walk. I am hoping that she will enjoy our cruise on the River Moselle, a tributary of the Rhine - we leave tomorrow. I will put a thick duvet in the back seat and make sure we have frequent stops in the seven hour drive.
She is less than four years older than me - it seems so unfair that she should have so many health problems.
I have read all the posts on this thread and I feel so much sympathy for all of you who suffer so much every day.

Have I recommended PMRGCAuk before? I know one of you has been on it. This link is to their latest newsletter but they also have members' blogs and questions which I have found very interesting and helpful