Polymyalgia Rheumatica

I would agree. It is much easier to keep pain under control, rather than to control once you've got it!
If you see what I mean!

All I can add to this is that in Germany it is an acknowledged fact that you need 2 years on steroids and then it should be over or the worst should be over.
A friend of mine is half way through and I do hope for her sake that this is true.
Nowadays it is considered best to be free from pain to prevent pain pathways forming between the muscles and the brain.

NanaAnna's doctor seems like one you could really do without. Why so negative when the patient is positive?

It sounds as if auto-immune conditions do run in families. My dad had PMR. He was so poorly that we had to pull him out of the bath. Then he got the steroids and was like a spring lamb!

My mother had Rheumatoid Arthritis, I have Systemic Lupus Erythmatous and my eldest daughter has Psaioritic Polymyalgia. Mother and daughter moaned and groaned and made invalids of themselves - I moan and groan and get out and walk, play golf, take my medication keep my weight down and keep positive and dont go to the GP for every new ache and pain. You have to fight these things hard.

raggymac, sympathy. I'm finding the web site
pmrgcauk.healthunlocked.com/questions
supportive and helpful. It is such a relief to find other people with the same problems and questions as I have. Before my diagnosis I had a swollen right ankle and with steroids the swelling quickly disappeared. The doctor said this was unlikely to be connected with the PMR, but it seems that problems with feet and tendons can be part of the condition. Doctors seem to vary between those who want to get your dosage down as quickly as possible and others who want to keep you free of pain. You know your body better than anyone else. Do it your way but don't live in pain.

I am very pleased to see this thread too!

I was diagnosed in January 2010-so over two years now. I am currently on 5mg prednisolone with an ESR of 38. That's the lowest it has ever been.

My GP said that if I want to be pain free I should up the steroids, but I really don't want to as they make it very difficult to control my weight.

I am very stiff in the mornings and I have developed a lot of discomfort right at the top of my spine. I sometimes wonder if that may be arthritis.

Does anyone find alternative supplements or changes to diet help?

NannaAnna very interesting about your alternative path to health.

What a good idea to start this thread.

I was diagnosed with PMR 3 years ago and had all the symptoms already mentioned. My ESR at the time was 111, so quite high. I was put on 15mg Prednisolone and for at least the last 18 months have been hovering between 3 and 5mg.

I have also recently developed a sharp pain in my right hip/groin which I had put down to PMR but which doc now seems to think is something else. I am awaiting results of a recently X-ray.

My mother had PMR and more or less got over it in a couple of years but it did recur to a lesser extent now and then.

I was lucky not to get many side effects with the medication. Prednisolone is much maligned on the forums but it save me from being housebound and in a lot of pain.

NannaAnna I am interested in what you have to say. I too think mental attitude and lifestyle could have a beneficial effect.

I was told that I'd probably be on steroids for up to two years - certainly not for life. I hope that this will come to pass.

I posted at some length on my experiences with PMR a while ago (Sorry, can't remember who it was in response to.)
Firstly, it is most certainly an auto-immune triggered condition.
Secondly, my experience might trigger extreme responses, depending on your mind-set, but all I know is, it worked for me, and yes, it is all in the mind (if you use that as a sceptical response) because of course it's all in the mind - in my opinion.
Once I actually made it to my GP, after about 4 months of increasingly excrutiating pain and immobility, it turned out that an emergency consultation with a rheumatologist was about another 4 months away!!
In the meantime, my yoga teacher, who had suffered a number of debilitating conditions in her journey back to good health in her (then) late 60s, recommended her kinesiologist. I didn't have the foggiest idea what a kinesiologist was, but her testimonies of health issues resolved after being written-off by conventional practitioners, convinced me.
She also recommended her nutritionalist, who in turn recommended a reflexologist. I saw all of them.
All three detected the same underlying issues. I am always very taciturn in such situations, because I am naturally suspicious of them building up to a diagnosis based on one's responses to open leading questions! Believe me, I give nothing away! I was therefore impressed and convinced.
Anyway, long story short (it's in that earlier post), by the time I saw the rheumatologist I knew I was feeling better than I had been, despite being told by the rheumatologist that was "impossible".
When the test results came back, she was visibly surprised that I needed a much lower dosage of steroids than she thought I would need! She qualified this by saying "Believe me, the doseage will go up, and continue to go up"
Well it didn't. It continued to go down. After 2 years I was off steroids altogether, despite having been told I would be on them for life!
I truly believe the mind is a great healer, and I subscribe to Reiki, and the power of universal energy in general.
I guess all I am saying is that there are alternative paths to healing, and if you believe in them, they work (of course)

Yes, jeni that's the thinking and it's what my dad was told all of 24 years ago.
Don't know how my last post got duplicated with your post in between! That's a first... The second one gives the correct web address.

glamma, don't be a martyr. If your dosage isn't working, put it up 1mg or 0.5mg at a time.

here is a web site where you can share experiences with other sufferers:

pmrgcauk.healthunlocked.com/questions

I have found it very helpful. Don't know what statins have to do with it but I will ask. My dad had PMR and that was in the days before statins.

And my MIL I don't know if it is becoming more common or just better diagnosed! I though the thinking was that it is autoimmune in origin?

glamma, don't be a martyr. If your dosage isn't working, put it up 1mg or 0.5mg at a time.

here is a web site where you can share experiences with other sufferers:

http://www.pmrgcauk.com/

I have found it very helpful. Don't know what statins have to do with it but I will ask. My dad had PMR and that was in the days before statins.

annobel and granny
Are you both on statins ?

What causes PR is unknown apparently, so maybe a little research into the effects of statins might be a good thing?

I am taking 5mg of prednisolone at the moment I have been trying to manage without it but find it nigh on impossible as the pain is so bad in the morning again in a similar area as yours annobel I had the blood test done in September of last year and the count came back quite high,i find more difficulty early morning but by 10/11ish the sluggishness seems to be under control,when it is bad it really makes me feel all of my 60+ yrs and very very miserable indeed.Best of luck on your trip next week enjoy

I still have to be very careful not to overdo things, GA. Driving is sometimes a trial and today I have been very grateful to my GD for doing my vacuuming. I have had to employ a gardener though. Can't quite see her doing that! I do hope your remission lasts.

I can't take steroids any more because of another health problem, but they were like a magic bullet for the short time I was on them. I try to manage the pain as best I can and some days are better than others, but I'm currently enjoying a period of remission, which is wonderful. I still get some occasional discomfort, but compared to the crippling (literally) pain I have experienced in the past I'm counting my blessings.