Old timers story

[Schurch]

Mine started about 5 1/2 years ago I literally got out of my car one day and thought I pulled a muscle on the inside of my leg from there it went to pain all over my body day by day until I could not hardly even walk up one step and I had to lift my leg to get their last leg into the car to drive couldn’t even hardly turn the wheel of the car my arms hurt so bad. My blood test show negative for PMR my rheumatologist believed with my symptoms he was 99% sure I had PMR. He said after three days of prednisone I would see a difference and he was correct I really do not remember the dose I started on I think it was around 15 I was able to get down to ten pretty quickly but couldn’t go down from there. So over the course of the 5 1/2 years I have tried to get off the prednisone and always failed this is the first time I got down to three but once I got to three it hit me really hard again. I’ve just been on five for a few days already seeing positive results. This group helps so much because knowing people with this it helps you understand you’re not alone. I worry about the osteoporosis but I’m determined the medicine has worse side effects and I’m determined not to ever go on that. I would’ve never believed I would have something like this I am not overweight I have always exercised and walk the treadmill. I am 69 years old I still try to go to the gym three times a week even when I’m suffering I will go. And probably as a lot of you know the more I move the better I feel. so by the time I leave the gym I’m feeling better. Yet when I was on the 3 mg I was struggling to go to the gym I was not able to do much of anything and then when I came home if I set for even a short period of time the pain was horrible. Reading things from all of you who have had this for five years or more I’m finally realizing I might be trying to get to zero too fast. When I initially got this my rheumatologist told me that usually last for two years I really think that was a statement he should not have made there’s too many out there who had this for a very long time

[DorsetLady PMRGCAuk volunteer]

Unfortunately it's a statement lots of doctors make, including the experts who should know better.... not sure whether it's ignorance of the illness or the fact they don't want to tell patients the truth about the length of time it can take to go into remission.

Whatever, it's really not good for doctor/patient relationship....and it makes patients feel guilty because they not "off the Pred" within 2 years.

The consultant ophthalmologist who diagnosed my GCA - said - at least 2 years on steroids, probably nearer 4, maybe for ever. More realistic, and didn't give me false hope.

[Charlie1boy in reply to DorsetLady]

Almost exactly the same as me when I was diagnosed pmr. I remember her words clearly " probably two years, but could be more, and maybe chronic".

She wasn't wrong, as I am still going with PMR after five and three quarter years!

Best wishes

Paddy

[Flutterbies57]

Old Timer ????? I'm not impressed ! I've just turned 70 ! Isn't 70 the new 50 ? My story is almost identical to yours !Just over 5 years now - told the 2 year story - down to 2.5mg now and suffering ! I am sooo glad I just joined this site. I was so fixated on getting off pred, I did not believe my problems could be still be pred or PMR related. Uh,oh, that is an old timers problem - too set in their ways. Bother !

[Constance13 in reply to Flutterbies57]

Sometimes the new 80 seems like the new 90.😟 Mostly, however, I 'hover' between 70 and 80.

[Valbee]

I am 82 and have had PMR for 6 years and 8 months. Mine started when we were on holiday for our 55 th Wedding Anniversary. On the great day I woke up and was almost unable to move. Dressing myself and doing my hair was impossible.

In desperation I went to a nearby Chiropractor who, after an examination and listening to me said ‘You have just given me a very good description of PMR’ which I had never heard of. Off to the GP who swiftly confirmed the diagnosis, a subsequent blood test proved them right.

I have never managed to get below 4mg Pred before symptoms returned. In spite of this I lead a very active life - dogs, beekeeping, garden etc and am so glad Pred is there for us. As others say this site is invaluable and my thanks to the wise ones who are there for us.

[calicojoy41 in reply to Valbee]

Loved what you wrote--it hit me the same way I woke up one morning and could not move the pain was so horrible hip girdle and shoulders down to my elbows--my husband had to try and help me out so I could go to the bathroom. We could not believe it ! We had never heard of PMR. I am 79 and mad as hell that this has happened in my last quarter!! But I am carrying on and trying to pace myself--not easy since I am type A PLUS!! I am so happy I found this site full of wonderful people!!!!