Hi all, I first got pmr about8 years ago. Like others I ...

I have been on this web site before. I swear my PMR was caused by taking statins for my colesterol after I suffered a small stroke. I had all the symptoms my stroke consultant warned me about with the statins but my doctor said it was not the statins, It got worse then I was diagnosed with PMR in June last year I was 57. I have never experienced anything like it and was so miserable expecially at the thought of taking steriods. My doctor started me on 20mg of prednisone which worked wonders. I started to reduce them after about 6 weeks. For the first 4 months I did not gain weight or feel any of the symptoms of the steriods then all of a sudden the weight went on up to 1st 7lb my midrif became huge and I had a goiter like bulge in my throat as well as the moon face. That caused me more heartache than my PMR. My doctor told me it was because of the steriods so I decided to try reducing them even more and am now on 5mgs per day. My face has gone down and so has my 'goiter' the weights another thing. It is hard to tell whether all the horrible things going on with me are from the PMR or the steroids. I am now down to 5mgs and find if I take a large dose of co-codomol 1000mg :lol: in the morning and another at night just before I go to bed It helps enormously. My doctor says that is fine and is pleased with the way I am coping. I find now that the co-codomol helps me more than the steriods and I take every day as it comes. So give it a try. My daughter is getting married in August and all I want is to look normal for her wedding photographs. On my down days I could cry all day but then cheer myself up by thinking at least it's not terminal it could be worse.

Margaret Wright.

Hi, I don't know if you have researched any of the websites that give advice on diet/supplements etc. But one thing I have tried in the last three months, having read it on one of these, is evening primrose oil. I had already been taking fish oil supplements for months but had resisted the evening primrose because of expense. I only decided to give it a go because I was getting pains in other places that hadn't been giving me grief before and I was determined no to put the steroids up again. However, within 3 weeks I was feeling SIO much better. I have been feeling so much better that I felt sure the PMR had gone and I was on steroids for nothing!. (During this time I have managed to reduce from 7 1/2 to 2 1/2 mgs as well.) However I overdid it with the exercise and lack of sleep last week and some of the symptoms came back so I know it is still lurking there. I couldn't say for sure if the evening primrose is helping but I feel so much better I am not going to stop taking it. ( I take the maximum recommended dose.) I figure anything healthy is worth a try! Let me know if you find anything that works, I really want rid of this before I am too old to enjoy what's left of my life! this was not part of the retirement plan.

Have only had this insidious disease for 2 1/2 years ,in which time been down to 5mg pred,but soon get flare ups--------the latest being 9wks ago ,and went on 10mg which worked , but when asked to reduce to 7.5mg became so ill ,could hardly move and had so much pain despite being prescribed morphine-which did not greatly help ; am now on 12.5mg along with devil's claw and distalgesic which is helping and mostly keeping me mobile/ish for part of the day.

do have disabled sticker but not for PMR, however, have been given free audio books from library as cannot hold a book for long.

only know of one person who seems to be \"over it\" BUT have spoken to so many who are not and Dr does not have any patients who,ve beat it-------SO DEPRESSING [this thought and the actual thing] ;the for is that it is not trerminal but againsts-SO MANY-especially seeing many who are over 20 yrs older-Im 60-\" running around\" doing so much!!

Margaret Wright,

Co-codamol are morphine based - check with your GP about dosage. I understand they can be as difficult to reduce after high dosage plus longterm usage.

I do not know if you are old enough to remember about Valium - given out like sweeties for depression and then they discover that they were addictive and some people where then on those tablets forever - other managed to come off them over long periods of time. It all depended how dosage and length of time taken.