The 5.9 Years Average Duration

[Nuff1]

I've tried searching with various permutations butcan't find a post with link to the relevant article or a discussion on the average duration of PMR.

I'm puzzled as to how the figure was arrived at as some people have been a fairly long time before diagnosis and some would not be able to give indication of when symptoms became apparent.

[DorsetLady PMRGCAuk volunteer]

This may be one that helps - but it talks about the time on Pred, not necessarily the actual length of the illness -

rheumnow.com/video/dr-kathr...

[Nuff1 in reply to DorsetLady]

Thanks

[PMRpro Ambassador]

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

are links to 2 articles with slightly different emphases about the study that determined the durations. It is what is called a retrospective study and was done on the basis of the medical records. At the bottom of one of the articles is View sources which gives the reference to the actual study.

It is not the duration of the PMR that is quoted but the duration of management with corticosteroids before the patients were able to taper off to zero. That therefore includes some time at the end where the PMR might possibly already be in remission and only the tapering to zero was required. That will be balanced to some extent though by the time before diagnosis and management with pred.

[Nuff1 in reply to PMRpro]

Thanks

[Devedaaee]

Interesting conclusion in the original study:

“Without testing for adrenal insufficiency, we cannot determine whether the prolonged GC use addresses the disease or GC withdrawal symptoms. Possibly the current PMR treatment paradigm is incorrect, and patients should be treated with higher GC doses early in the treatment regimen (6, 14). Whether subclinical large vessel vasculitis contributes to this protracted use is unclear. Improved therapies for PMR are needed to minimize dosage and related AEs.”

[PMRpro Ambassador in reply to Devedaaee]

I know people who have had PMR twice. The first time they started at 30mg and had a straightforward journey. The second time the "avoid high doses" mantra had arrived and they started with 15mg and had a far more convoluted path.

Since, as far as is known at least, pred doesn't actually have any effect on the underlying disease process, the logical conclusion must be that there is probably a lot more large vessel vasculitis in apparently simple PMR than is thought and it isn't being well controlled. It might answer a lot of questions for me!

[jinasc in reply to PMRpro]

Me too.

PMR is Vasculitis and the sooner they admit this the better in my old brain.

[Beachygirl1]

I have also been looking at information re duration. I was diagnosed in 2011 and have been on steroids since then with intervals of tapering. I also have fibromyalgia but my current rheumy wants me to come off steroids and take meds for fibro. I find the pain from reducing my steroids is still related to PMR and I am struggling. So looking for info re duration and Dr Dao's video was very helpful. Hope to find more information though. Thank you.

[Blearyeyed]

Thanks , my OH , a Maths Teacher and Examiner appreciated your reply .

Perhaps we should start using our figures to help him teach Mean , Median and Mode , and in turn his pupils , graphs and charts from the experience of patients here on the HU forum could help our Doctors better understand the true duration of GCA and PMR .

Anything to stop them causing so many people Steroid Taking Guilt and the stress related to it .

A little less uninformed Doctor Badgering would go along way to reducing our stress , and in turn our pain and actually make the process of having these diseases easier to bear while they are about.

[Blearyeyed]

😂😂😂😂