age 49 pmr diagnosed sept.07

Helen, it's a shame you had to suffer for quite so long but pleased to hear you are now getting the right treatment. Last Sept (2006) I was diagnosed with PMR, my ESR at the time was 66 and I was prescribed 30mg for 1 month, then 20 mg for the following month and by November I was down to 10-mg. It has been a struggle but I'm now down to 8mg. The general concencus of opinion seems to be that you take as many as you need to make your life comfortable. I know of one GP who said if you cut your dose below the required comfort amount through fear of steroid side effects you could be preventing PMR burning out. A group of us from this website have joined together as PMR fighters. We are sharing experiences and contacting self help groups ( of which there are very few at present) and in the process of setting up new regional self help groups. Also we are in contact a leading expert in PMR and GCA who has been awarded a grant for research. If you would like to join us please e mail pmrfighters@yahoo.co.ukfor more info

Note - Patient Admin has removed the Professor's name from this posting but left in the e-mail address.

Helen

My PMR started January 2007 (only 48 years old). There seems to be several people under the age of 50 on this site already - so I don't believe it's that unusual anymore.

My doctor started me on a low dose and I've just reduced to 1mg a day. Each time I reduce my dosage, the pain gradualy builds up until I end up crawling upstairs, am in constant pain and get very little sleep again. Although very tempted to increase the dosage, I've persevered (so far anyway). The pain did start to level out later giving slight respite mid-afternoon (this period of time slowly increased over the weeks to about 4 hours where I could then get some housework done).

My pain has already started gradually increasing (especially arms and neck) and I know that over the next couple of weeks it will get to the stage where I will be in pain almost 24 hours a day.

Bear in mind, this is my own personal experience and may not be the same for other sufferers. Maybe I'm just one of those people will a good pain threshhold - I don't know. I also think it depends on how much pain you can 'put up' with and how much help/support you have at home.

I, like Pammy, am also part of PMR Fighters. Apart from the research side, we also support each other. Well worth contacting us.

Jayne

Hello Helen

I'm Kate and I've had PMR for nearly two years. I was started on 20mg a day with the same miracle effect you report. However, I was kept on 20 for three months and then came down to 17.5. After that for three months, a reduction to 17.5mg one day and 15 the next and so on. I came down to 7.5mg a day this way with very few problems, but started to suffer badly again when the hospital doc tried to get me off them. Ask your GP if you could go on a slower reduction regime - you never know, you may feel more comfortable.

regards

Kate

Helen

Im 51 and have had PMR for 18 months. My expereinces generally concur with Jayne, Pammy and Kate. It seems that most sufferers are able to quite rapidly reduce from the high dosage of prednisolone which is usually prescribed on diagnosis. The difficulty in reduction appears to more stubborn when you get to 10mg or under. For myself (and we are all different) I came down from 10mg to 7.5mg per day about 2 months ago. I am defintiely 'living' with alot more discomfort now and it is interesting hearing from Pammy that the docs say that taking dosages below the comfort zone can delay the burning out process.

I remember my GP saying to me about a year ago when i was really in the grip of this disease ' dopnt let it stop you living your life' easier said than done i know now but I think what he was saying was be positive, stay active and do what your body will let you do. I think the hardest bit of this for me has been that it has really knocked my motivation - I used to be really athletic and sporty and find it really hard at times.

Just try and dig deep though and be positive. I think the self help groups and websites are a great source of support. Good luck and best wishes Tony

Dear All,

I am 48 and have been to my osteopath today and he has said he is writing a referral letter to my G.P as he suspects I may have PMR. I will have to go for a blood test and have found reading all of your comments very helpful.

I am very worried that I have this condition as I appear to have all the right symptoms and am very concerned if so that I will have to take steroids. Many years ago I had to go on them for a short period and ended up looking like Bessie Bunter and had terrible nightmares.

Watch this space!!!!!!!

Hello Fruity

Don't Panic! I know that is easy to say, and guess what, I too had a wobbly when first diagnosed. Would be very interested if you would keep us up to date with the diagnosis from your GP.

If it does turn out to be PMR the almost instant relief you get from the steroids is wonderful. I am no expert but I think the modern steroids are not as bad on the side effects as they used to be. But that is not to say that you still have to be prepared to deal with them.

I am involved in a support group for suffers and if you would like to find out more about us we would love to hear from you on pmrfighters@yahoo.co.uk

Good Luck and try to keep smiling.

Hi Helen

I have just been adding a post asking if anyone younger has been diagnosed I am 40 and have been in agony since I came out of hospital last year I have had the blood tests and CRP and ESR were raised I to have been put on antidepressants. PMR had not been mentioned to me by my GP I assume due to the age thing. But one of the other nurses at work mentioned it and I have researched it myself. It is me all the symtoms are there my fear now is not being able to get the consultant to agree to try my on the seriods to see if this helps what do you think my approach should be?

I was just diagnosed with pmr- I am 49 and have a low esr -30 but symptoms confirm. Trying Zorvolex before trying steroids. They seem to be working somewhat.