Maybe my reumy was right after all?

[Pirnilla]

Some of you have followed my odd Journey meeting a reumy 1,5 month ago telling me that he was pretty shure that I didn’t have PMR due to my ”Young” age. I’m 47. He suggested a Pred withdrawal quicker than anyone in here would advice me to.

I have tapered 2,5 mg every second week, from 17,5 to 5 in 6 weeks. And I’m fine. Really, I don’t have any PMR symtoms and not much of withdrawal pain either. Just a burning feeling shortly in my left thie muscle sometimes.

I have a lack of energy that comes on very suddenly aswell, but subsides if I rest.

My hope is getting stronger of course. Can he be right?

[DorsetLady PMRGCAuk volunteer]

Hi Pirnilla,

Let’s hope he’s correct - but has he said what he thinks it is?

[Pirnilla in reply to DorsetLady]

No, he examined me thouroughly and I have been through all kinds of x-rays and ultrasound to find other disporders without no signs of anything so....

He said "sometimes there is symtoms of something we don't even have a name for".

I cross my fingers hoping I soon will be off Pred AND other symtoms how strange it may seem.

[DorsetLady PMRGCAuk volunteer in reply to Pirnilla]

I guess as others have said in your previous posts it might just be a result of your pneumonia, let’s hope that’s what is was, and you can get on with life.

Good luck, and take care.

[SheffieldJane]

I hope you are right. It doesn’t Seem to be behaving like PMR. I know that there are some very odd viruses out there. You might never know I guess. I hope your recovery is complete and you can get on with your life.

[piglette]

I read somewhere that only sixty per cent of people diagnosed with PMR actually have it. I must admit I thought that seemed low but could be right. Several have problems such as vit D deficiency, Lyme disease .......

[Soraya_PMR in reply to piglette]

Only 60% of people diagnosed with PMR actually have it?

OR only 60% of people with PMR can get their doctors to agree with PMR diagnosis?

[piglette in reply to Soraya_PMR]

The thing I read was that 40% were misdiagnosed.

[PMRpro Ambassador in reply to Soraya_PMR]

GPs do often assume it is PMR when it isn't - most common switches in dx are to an inflammatory arthritis which also responded to pred.

[Hidden]

Could be.... Stranger things have happened, I suppose!

I'm happy you are feeling okay! That's fabulous!!!!

[PMRpro Ambassador]

He may be - but equally, 5mg may be quite enough to manage any inflammation. Some experts do wonder if there is a reactive form of PMR - there is a reactive arthritis, occurring in response to a severe systemic infection.

We'll see - but I hope it does work.