[After having 3 differant viruses, one being flu symptoms,i was left wth the aches and pains which accompany flu,the pain just got worse untill i couldn`t move ,at which point i made a visit to the docters surgery.i discribed my condition, the dr. then arranged for me to have a blood test there and then, the result`s were back within day`s, i was then perscribed predesilone steroid treatment on a dose of 30mg.per day.during the next 5 month`s my medication was lowered untill i was taking 10mg`s, after 3 week`s the pain returned and the medication was hired slowly untill i reached the original dose of 30mg`s, i am now after 2 month`s on 20mg. started to decrease the medication slowly at the rate of 2and half mg`s at a time.
i have found the steroid`s worked really quickly, but have had quite a few side effect`s weight gain, swollen face and chin, tiredness, depression and sleepless night`s. but i will put up with this as i am feeling a lot better than i did, this is the first time in 8 month`s . i hope i continue to improve.
g.j.c.
So sorry to hear of yet another person out there who has Polymyalgia but, as you said, do hope you continue to improve. Although we have to put up with all the side effects such as swollen faces and weight gain, at least it's preferable to all the pain and immobility of life without steroids. It does seem that, like yourself, a lot of people report having had a virus just prior to PMR which appears to have been the trigger but there also appear to be numerous other possible triggers. Research is being carried out at present and perhaps at some future stage we will have more answers, hopefully leading to a cure! I am currently on a 5mg dose (after 18 months of increasing/decreasing) and have to stay on this dose for another couple of months, making 6 months in all on the same dose. Hope it helps to have found this site and like sufferers. Keep well!
Mrs.O
Hi g.j.c
here are some support groups operating in the UK for PMR-GCA UK.
These are currently located in Southend, Essex, and Tayside, Middlesbrough and others ones are on the process of being formed.
If you care to email pmrfighters@yahoo.co.uk we can help you locate your nearest support group and supply you with some information which maybe of some help to you.
This site, Patients Experience is so necessary to help us all in exchanging views and learning from other people's experiences about this long neglected disease for which currently there is no known cause and no known cure. Sone Reasearch is currently in progress led by a Professor Dasgupta in Essex and a Dr S Mackie based in Leeds.
Remember that steroids are not the enemy they are helping to releive the symptons of PMR and GCA. Do not come down to fast, listen to your body and only come down slowly and have regular blood tests and work closely with your GP and Consultant Rheumatologist.
Oh and there is an International Survey run by patients for patients at this web address. http://www.quantisurve.com/cgi-bin/pmr.asp which would be helpful if you could take the time out to fill it in.
mrs k
These groups are in the process of forming a national organisation whic hopefully wil be launched at the end of this month.
Hi g.j.c
Me again. Yes all the side effects you mention are quite normal and unfortunately so is the fact that the steroids need to be increased. We all get fed up when we find it necessary to up the dosage. But you will gradually reduce again.
I expect you are now learning that you have to pace yourself. You know sometimes that you will suffer afterwards but you also know the things that are worth the after effects.
Look forward to hearing from you.
morwe
Hi everyone. I started on 15mg and then upped again to 30 but it didn't get rid of all my symptoms. I am now doing one week on 40 as my GP noiw isn' so concvinced I have pmr. :o he thinks I should now bw in what he calls steroid heaven and is concened about having such a hihgh dose - is anyone oiut there on a dose this high? I have the weight gain, the insomnia and a face like the moon!! :roll:
Dear Jaki
Much sympathy you poor thing. Has your doctor done blood tests such as ESR (Erythocyte Sedimentation Rate) and CRP (C-Reactive protein). Reading through the experiences on this site most people with PMR seem to respond to 20 mg or thereabouts and then gradually come down - not go up to the heights you are on.
Do hope your symptoms improve soon.
Margaret S