Length of time of PMR

Thanks Diana. I just wonder if 5 mg does much harm.

I have had PMR for 5 years.  Started on 30 mg then had to increase to 40+. 

I have reduced very slowly, but however much I try, I cannot get below 5 mg.  The doctors say 5 mg is a 'safe' level (?) and should have no side affects.

If I have to stay on 5 mg for life - so be it.  However, I am 77 years old so a comfortable relatively pain free life is more important to me than getting off Pred.

Good luck!

There are people whose adrenal glands never get up to speed after they have recovered from PMR itself and they usually stay at a dose around 5, I think or even slightly higher, with apparently no ill effects.  I'd think you'd just want to remain careful of diet and exercise, especially to protect the bones.  I think other side effects, like the obvious ones of moon face, buffalo hump, changes to hair and nails, diabetes, glaucoma, etc, are very unlikely at such a low level, most people say they are very much back to normal by then.  Certainly something to discuss with your doctor, and perhaps ask for the test which checks whether the adrenals can wake up.  I think it is called synacthen test.

BTW I understand it can take up to a year after coming off pred for the fatigue to go away and all the hormones to be back in normal balance anyway.  My doctor told me at the very beginning of my pred journey that sometimes her patients keep a supply of 1 mg tablets on hand and take these if they feel the need, and eventually the need becomes less and less and finally goes away altogether.

My neighbour got completely off pred but then had to go back on again feeling unwell,  Her GP put her back to 8mg and she took 2 years to get off it again.   I wonder now if she really needed to go back onto as high as 8 but she just did what she was told and didn't question it, not following on a forum.   She is now fine and leading a normal life and looks great which is encouraging.

It does sound like she came off it too soon, doesn't it?  Pred doesn't cure anything, we have to wait for PMR to leave in its own sweet time!  Very encouraging to hear of a success story.  How long was she on pred the first time?

Thanks Constance.  You ve more or less said what I suspected I shall have to go back on the steroids but as I seem to function quite well at 4 mg and I am 80 so quality of life seems to be more important at the moment.   Thanks for your input.

I find this forum really useful and thanks for your advice I shall go back to my GP

but at 80 I dont think I want to wait a year to see if my adrenals wake up - I cant live for ever so I may bite the bullet and go back on the steroids.  At the low dose they dont appear to give me any side effects (not that I notice) but certainly make me feel much better than I have for the last few months. Thanks again.  This forum is really great, at least you can get other peoples experiences and see how they apply to you.

I have to say that it amazes me that after looking after a patient with a desease for 6 and a half years, a Dr still doesnt know much about it. Surely their job is to look into their patients problems isn't it? Their training doesn't and shouldn't stop after medical school.

Thanks for your commnts Tastyron. I dont know how common Polymyaglia is - my first diagnosis took about 4 months and my sister's doctor told her, he only seen one case in 25 years.  So is it rare or just being missed?  

Last sentence!  A bit of both I suspect!

Like most of us, I had never heard of PMR until ny sister mentioned that it could be what ails me. Her mother in law in California has it and since I've been diagnosed have heard that my car mechanic had it years ago and my next door neighbour (we only talk about once a year, no problems, just we all like to keep ourselves to ourselves) had it and GCA as well. Thats why her weight suddenly ballooned. It seems as if it's like getting a newer car and suddenly seeing the same model everywhere.

I know of at least 10 people who have /had PMR.  All 4 men have come off pred within 2 years, one with a relapse but the rest are fine..lucky things. My close friend is going into her 6th year and that's how I knew I had it immediately as recognised the same symptoms.  I then was daignosed in A&E where I spent a whole day with everything being Xrayed and tested so very thorough.  My surgery also say when I go for regular blood tests that  they treat many patients with PMR.

Don't you mean "old banger"?

I only know one other person with PMR, and coincidentally it's the father of my daughter in law.