Has ANYBODY recovered from PMR in less than 2 years?

[Bamber99]

Since being diagnosed in August I’ve been an avid reader of posts and have met many lovely people suffering from PMR. However so far I’ve not come across anyone or mention of anyone who has had a quick recovery. Does anyone out there know of someone that’s had a quick recovery?

[DorsetLady PMRGCAuk volunteer]

Hi,

I’m sure there are some “quick” recoverers, but I doubt their PMR is as problematic as that discussed on here, so they are unlikely to be on this forum, and even if they do dip in, they don’t stay around!

[Rimmy]

Hi

I have just posted I am feeling 'better' after almost 2 years (PMR/GCA and still on 15 mg) - but I qualify this comment with the realisation I am still in the disease 'process' and that it is unlikely I will be fully recovered in a 2 year framework - as this isn't what the stats indicate is 'usual' - rather more like double that (or more) that time-frame I'm afraid. BUT its is possible as DL says some (less visible here) people may be so lucky - and we should all keep our 'hopes' up without assuming it will be over so soon. The other factor to consider though is that we may have been unwell for some time prior to diagnosis and if we knew when our illness truly began the duration might look different - but this is quite hard to determine as well for many of us ....

Rimmy

[Charlie1boy]

Hi,

Well, I guess there must be quite a few, because the rheumy who came to talk to our Group some 18 months ago assured us that PMR usually lasts only a year!

I'm almost four years in with PMR, and I can remember my jaw dropped. Obviously, I challenged him, but he was pretty adamant in his opinion.

I guess Dorset Lady has the best answer, not least because I am aware of a couple of people for whom the affliction was over within two years.

Good luck

Paddy

[jinasc in reply to Charlie1boy]

Dorset Lady is correct in her thinking to me also.

A longtime ago I read statistics which said, out of every 100 people with PMR 94% were female.

I do know a few....................... one woman and about 7 men.

How do I know? They either came to a meeting for a couple of times then sort of disappeared. These were people who seemed not to have any problems at all.

We only really get to hear from the those who run into problems ones or the ones who have been told 2 years and then find that does not happen or (and this is not nice to say) or there medics try to get them off too fast and then !!!!

PMR patients are dealt with, in the main by GPs (Primary Care), and are only referred to Rheumatologists (Secondary Care) complicated cases or when something goes awry.

I guess that is why that Rheumatologist is under the wrong impression.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

HI jinasc

You can’t have your Viking head on today, methinks you might be slightly generous in your comment regarding Rheumatologists and PMR. 😏. They have access to the same info we do regarding the duration of disease.

Freyja x

[PMRpro Ambassador in reply to DorsetLady]

They don't read it though...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Oh no, course they don’t, silly me.....

[Hidden]

I wish I did. : )

[PMRpro Ambassador]

In 10 years on the forums I have come across a couple of people who got through pred treatment in 2 years - one for PMR and one for GCA. However, the GCA lady developed PMR about 4 years later! I think in general that people with GCA have an easier time getting off pred - unless they develop PMR as the dose reduces. Then all bets are off...

This study

practicalpainmanagement.com...

medpagetoday.com/rheumatolo...

- same study, just different emphases in the articles - found that 19% of patients stopped pred within a year, 37% were off pred in under 2 years. Half took up to 5 years and at 10 years only 58% of patients were no longer on pred.

You don't hear about the "fast responders" on the forums because they either don't need us in the first place or they never have problems reducing the dose so dropped out early on. And I think there are at least 4 different versions of PMR - it isn't a homogenous clinical picture but too many doctors don't realise that.

As for Charlie1boy's rheumy - I wonder how many patients he has seen. And how long they had had PMR symptoms. I had had symptoms for 5 years before I started pred. If you look at my medical records and take pred management as the duration it is totally wrong,

[Ciar in reply to PMRpro]

His rheumy may be like the one I had. Firmly believing that we recover in a year, and relentlessly forcing reductions in spite of relapsing, blaming symptoms on any crazy thing other than the obvious PMR. Finally in desperation you just get a new doctor, like me. Since you no longer come in for appointments, you must be cured. Another PMR case lasting a only a year...

[PMRpro Ambassador in reply to Ciar]

I've expressed that theory too - difficult to say how many patients do vote with their feet or move though isn't it?

[Constance13 in reply to Ciar]

Good point - change doctor PMR disappeared!! I think there are a lot of rheumies who believe they have 'cured' a patient in less than 2 years.

[MhairiP]

I'm hoping to recover in less than 2 years - does that count?! 😉 😆

Seriously, though, I'm one of the fortunate ones who seem to have no problems - no more pain, very little fatigue, no pred side affects, apart from pred-head. I've reduced from 15mg in July to 9mg now.

It's interesting that PMRPro said that there are at least 4 different versions of PMR - perhaps I've got "PMR lite"! Having said that, I realise it could all go horribly wrong at the drop of a hat (or the drop of a pred tab!).

[PMRpro Ambassador in reply to MhairiP]

My pain is negligible, I have no pred side effects and generally feel well most of the time. I have been as low as 5mg, more recently 7mg. But every so often I flare, nothing to do with reducing. 9mg is a comfortable dose, I feel well on that most of the time - but you can't see round the bend.

[Daisychain12]

One doctor told me “ PMR is a chronic illness that lasts up to 6 months.....” 👹👹👹👹👹

[Constance13 in reply to Daisychain12]

Had to laugh at that! I wonder where he studied medicine??????😂😂

[Dobermanlover]

I saw my rheumy 2 weeks ago and he sat there and told me that PMR lasts for 18 months! Perhaps I'm using the wrong calendar! My jaw dropped and I said that I knew people who had it for longer than that. he just looked at me with that simpering smile they have when looking at someone stupid! I must admit that it did upset me, but soon realised that I was dealing with someone who 'knows it all' and nothing is going to change his mind. He wanted me to reduce quickly, 1 mg every 2 weeks, (I am currently on 9.5) and go back to him in 8 weeks. Needless to say I am not going to risk my health and will reduce at my own pace.

[PMRpro Ambassador in reply to Dobermanlover]

You just sit there wondering don't you? There is NO medical literature that says that - so has he EVER read any of it? Or, no doubt, he knows better than the experts. So thanks - I'd rather not have him as my doctor, just in case...

[Constance13 in reply to Dobermanlover]

Haven't you heard - it's all in our minds?!!!!!

[OutdoorsyGal]

I’m one of the lucky ones. Had symptoms for only 3 weeks before seeing an MD and going on 15 mg prednisone for 3 weeks, then 10 for a month, then dropping 1mg each month till done. Less than a year from 1st symptom to off pred. (And no fatigue ever.)

But then it got interesting, as other aches in elbows and wrists, and sore outer thighs (tendons?) crept in, making me wonder if PMR was still lurking or if it was prednisone withdrawal, or other arthritic conditions I didn’t have a year ago before PMR.

I have toughed it out with Aleve, and am getting less stiff and regaining strength and flexibility.

So I hope I’m done, but I’m not totally convinced. My Mom had PMR and couldn’t get off prednisone, complaining of “weak legs”. She ended up with avascular necrosis in one hip and having to have it replaced in her 80’s. She also ended up diabetic. I’m hoping to avoid those complications.