I am 56 yrs and was diagnosed with PMR 2 years ago in May. I had been complaining to my GP that I kept hurting all over, and then had areas of \"sore\" skin. It might be the top of my back for a few days, then it would be the outside of my thigh for a week or two, then my buttock area - always moving around. I finally was referred to a consultant when I could hardly lift my leg to put my trousers on! My husband used to remove my shoes at the end of the day because I couldn't bend to reach. Getting in or out of the car was a nightmare, and I panicked badly when I was in the middle of town shopping, and suddenly felt like I could not move another step. I did get home but it frightened me. Another time I squatted down to talk to my grandson and then could not push myself back up to a standing position without help. I was not sleeping paticularly well, waking at around 2am every day and then not realy going back to sleep properly - cat-napping and experiencing extremely vivid dreams was how I spent my night! I can't say I felt particularly tired the next day though. I had my thyroid zapped and take thyroxin for about 16 years, together with 2 blood pressure medications (one of which was Amlodopine).
Anyway, the consultant did blood tests which were normal (ESR 11 from 44, some 3 months earlier), and RA was negative. I was started on 15mg prednisolone and three days later could have climbed Everest!! After 6 weeks I was brought down to 10mg and was then to reduce 1mg every 6 weeks. By 7mg the heartburn was so severe I thought I had had a heart attack! I was allowed to jump to 5mg so that I could take a coated gastro-resistant pill. Each time I reduced, I experienced some aches and pains but worst of all was emotional and tearful spells, crying on and off for 2-3 days. After a week or so, this always settled and I got over these spells. Down to 2.5mg, I asked if I could come right off, as my hair was going through phases of falling out, my eyes were uncomfortable and the night sweats were unbearable. He agreed that I try. Even at 2.5mg, at least my chubby face slimmed down and I lost a stone in weight (I actually put 2st on - mainly around the facial area and middle - I am unsure how much was also due to middle age spread, menopause and total lack of exercise?)
I think on hindsight I jumped from 2.5mg to 2mg, and then to 1mg too quickly. I alternated two days of 2mg, one day of 1mg for almost two weeks and then 1mg for two days and none for one day for only about a week, and finally stopped altogther on 24 February. Almost at the same time I suffered a viral infection with a bad chest, cough etc and had two lots of antibiotics. I expected the pain flare as usual as this had been gently ticking along all the time of reducing, but was bearable. This has gradually built now into different symptoms - while I had pain in my upper arms at diagnosis, the pain is now such that carrying a bag far is tiring; my shoulders are painful, my neck is stiff, my knees kill me at night some times, some days my wrists hurt, some days my feet, every day the muscles in my upper front thigh are so painful that I avoid sitting in a low chair as I know it will hurt to get up. My buttocks feel as though a horse has kicked me. The funny thing is, the worst symptom at diagnosis was not being able to get my foot up to put my socks/trousers on, but that is not so troublesome now. Going up or down stairs is just awful as the pain in my front thighs is so bad. Some days my fingers hurt and other days I feel burning and stabbing sensations in my buttocks and lower back. I have phases of pins and needles in my hands and arms at night, and sometimes my legs are really painful and cause me to have to \"stretch\" (like a cat), while in bed at night - it is a strange feeling of almost a tingle all over, which then goes after stretching. Then, on another day I get up and wonder what has happened as I don't feel so bad.
I now cannot drop off to sleep and spend the night in such intense thought and dreams, it seems so many of them, so I must be cat-napping, and some dreams just so bizarre. I felt sickness on and off for weeks but this has almost stopped thank goodness. I have had numerous bouts of heartburn and take Gaviscon, as I struggle with Omeprazole. My hair is still falling but no bald patches just thinned quite a bit. I have spent the last couple of weeks feeling as though something awful will happen, I have been extremely tearful and feel continually plotting \"some plot\". The last straw today was the cat catching a mouse - and a flood of tears for the poor little thing, and what if it had babies, etc etc! I have a fairly responsible job and have always been a good multi-tasker, but actually cannot cope with one task at work at present. I feel continually overwhelmed, and with some job changes looming don't actually know what I will do if I get asked to learn anything new! I can't remember names, forget what I am saying in the middle of a sentence and worry what everyone is thinking.
I have seen my GP, asked for an ESR to be done with my 6monthly thyroid test, and have asked what best dose of steroid I should take again. I see the consultant in late May. I have been off treatment for almost 2 months and feel as though I have put myself back two years - I think that remaining on 2.5mg may have just kept things at bay and bearable for me, and therefore have gone back onto 2.5mg starting today!! When I see the consultant I should be in a position to tell him my ESR (remember I had no problem with that at diagnosis), and will know how the steroids are affecting me after taking them again for approx one month.
Perhaps I am one of those who will need to stay on low dose for some time - all I know is, this whole thing is getting on my nerves! I don't really want to take steroids for ever more, I am fed up with this constant pain presenting somewhere different in my body all the time. I'd like to go to bed and sleep the night and get up without shuffling for the first dzen steps to loosen up.
I'll let you know what my consultant says next month, and also if I feel any better in a few days - which might just prove a point if I do.