Recurrence after 12 years

[Nana4boys]

Hi everyone,

I am very surprised to find I have a bad flare up of PMR after being well for 12 years. I would appreciate feedback on this since the articles do not cover this likelihood (at least the sites I have looked at). Thanks very much.

[piglette]

I don’t know what your symptoms are, but could it be your adrenal glands causing the problem rather than the PMR?

[Nana4boys in reply to piglette]

Interesting idea - will ask at my next MD appointment- thanks!!

[piglette in reply to Nana4boys]

Good luck

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear this, and although a reoccurrence of PMR is not that unusual for some, 12 years is quite a longtime.

As you’ve had it before and Pred seems to have reduced ESR then I’m guessing you know it’s PMR and not anything else. Have you suffered any trauma [of any sort] recently to account for return?

In your bio, you state side effect of Pred -what exactly?

[Lyn_seaside]

Gosh! Scary! No answer but feel for you. I've been clear for eight years and hoped that PMR had given up on me! Hope you feel better soon.

[PMRpro Ambassador]

Hi and welcome!

Ah well - we do!!! Once you have had PMR the propensity for your immune system to go haywire again remains for life. The majority of people who have PMR get off pred after a few years and never see hide nor hair of it again, But a small proportion find the beast crawling back - most common is after a few months but that is usually because it hadn't gone away entirely and the dripping tap of inflammation fills the bucket and you feel it again.

On the other hand, relapse after some years happens. I know several who have had it twice, some a couple of years later and some 8 or more years later. Doctors call it all relapse - I think the word recurrence is more accurate when there was more than a year between discontinuing pred and the return of symptoms.

The literature and handouts from anyone concentrate on relapses in the first few years after diagnosis during or soon after pred was discontinued - which WE call flares and are more often than not almost entirely due to injudicious approaches to tapering - too far, too fast, ignoring returning symptoms, denial that pred didn't cure anything and so on. It is far more difficult to find articles about later relapses like yours.

On another forum there are 2 ladies whose PMR is very different. One says "PMR 1999 30mgs to nil 3 yrs few problems. Clear 5 yrs, ret Feb 2008. On 15 mgs. more difficult ride. Muscle weakness, more pain, yo-yo dosing, depression. 1 mg. , zero pred Oct 2013". The other was on pred for 2 years, got off in 2013" Neither have had any signs of PMR since.

Everyone I know who has had it twice (and the one or two who've had it 3 times) all say that each episode has been totally different, There are a few around on the forum and I hope they will see your post.

If you follow this link

clinexprheumatol.org/abstra...

and look opposite Abstract at the top you will see a large orange P - click on that and the entire paper comes up. It downloads and opens for me rather than just opening - new feature of Microsoft I think, don't like it!!!

One of Docken's patients had had 14.7 years of peace before PMR recurred. I was part of a very funny discussion with Sarah Mackie, Leeds, England, Max Yates, Norwich, England and Christian Dejaco, Bruneck, Italy about this and it was suggested that the "R" words in PMR should be defined very much more clearly! Remission with and without medication (they are different). relapse, recurrence, return - any suggestions for any more???

[BettyE]

On another forum there are 2 ladies whose PMR is very different. One says "PMR 1999 30mgs to nil 3 yrs few problems. Clear 5 yrs, ret Feb 2008. On 15 mgs. more difficult ride. Muscle weakness, more pain, yo-yo dosing, depression. 1 mg. , zero pred Oct 2013"

That is me!. Eleven years further on I just don't know if I am clear or not. Have had arthritis for many years and asked for blood tests a couple of months ago as was experiencing increased pain. ESR was borderline.. didn't do CRP for some reason.." Proceed with caution" was the recommendation but don't know to whom that referred. Just don't have the resilience to try and access NHS so have done nothing. Stiff days, very stiff days. PMR? Old age? arthritis?. Until someone comes up with a definitive PMR test we'll never know.

Will be very interested to hear how you get on, Nana4boys and wish you the very best.