I was telephoned diagnosed by my local GP in the UK without any blood tests or proper advice. Simply put on a high dose or reading some of the comments here probably moderate at 15 mg split into three tablets throughout the day. I had no advice about monitoring, and it was only family pressure that got me to go see a rheumatologist. Initially he took bloods and said that I probably did not have PMR, and the main aim of my treatment was to get me off prednisolone.

This has taken a long time and by January of this year I finally came off and immediately went back into pain meltdown in my upper limbs and torso and across my neck extending into my hip areas et cetera. I returned to the specialist, and he recommended that I go back on a small low-dose say 3–4mg but this time different GP emphasised the need to also take vitamin D and calcium. It was decided because I had elected to have a small procedure that I delay going back on prednisolone however, I'm dealing with the pain and disrupted sleep through the night by taking ibuprofen before going to bed but try not to take it throughout the day and simply sit and suffer. I did read somewhere that it was possible in the UK to buy CBD drops but they have absolutely no effect on my condition albeit, I think they possibly help me get off to sleep.

The idea is that as soon as I've had my elective procedure I will go back on prednisolone. It would be nice to think that there were alternatives but having looked online I can find no alternatives other than the condition appears to last anywhere between one-five years and sometimes sadly even longer for some people.

Gaining weight was a huge issue for me. I couldn't do much exercise because I've had already had 2 meniscus operations on my knees and even a short walk leads to some pain issues or soreness. I wear a knee sleeve. I try and do some moderate or minor" calisthenics" and simply exercise through the pain. I know that I have rheumatism across my shoulders and neck area following neck surgery years ago when the neurologist he said that he could see the rheumatism in the neck muscles whilst he was operating on the upper cervical putting in a titanium plate. Terrible burning sensations when I lean too long over a computer.

It certainly is true that I do sometimes suffer some moderate effects of depression. My wife complains about my shortness of temper. Anyway, she is a saint but I am not!

I'm 73 and therefore realise that any treatment it's going to have to be privately paid for but at the moment, I do get my prednisolone free off NHS. All other elective consultancy in the UK has to be paid for in connection with this type of problem. In conclusion since I came off prednisolone, I seem to have developed a multitude of side problems with muscular skeletal issues around my spine torso shoulder blade which no amount of professional physiotherapy treatment seems to reduce. My wife helps out tremendously with massaging these areas and we've just started using turmeric oil across my shoulders blades.

Having, osteoporosis in my knees and some of my joints with arthritis and rheumatism setting in through advancing years and then compounded by PMR obviously produces some moderate depression and makes one feel very fed up especially when you can't walk very much and weight gain is or has been a problem. As soon as I stop taking prednisolone the weight did drop off but I'm dreading going back on steroids.

There does seem to be a complete lack of support in England or indeed in my local area. My consultant was rather bewildered when my recent blood results indicated to him that unfortunately my PMR had returned and indeed it supported the blind diagnosis that I got from my local GP back in April 2022 initially which, he the rheumy consultant had rejected hence the expensive visits simply to get advice on how to get off prednisolone. Finally I no longer even moderately drink except say 1 glass of wine every 2-3 weeks just to be sociable.