Remission from PMR

[Summerrental]

If it takes 5.9 years to get in remission from PMR, is that from the time you start on Prednisone or from the time when you started experiencing symptoms of PMR?

[SheffieldJane]

This is an overall average time period for PMR it can be both shorter and longer. Doesn’t help, I know.

[PMRpro Ambassador]

No, that isn't the time it takes to get to remission. That is the median (sort of average) time patients required management with pred before getting off it. Some people needed a couple of years, some people needed 10 years and most people needed something in between A third are off pred in 2 years. 40% are still on a very low dose of pred at 10 years. Some people will have been ill for some time before and not been diagnosed.

The figure is an indication of how long you need pred and the study shows that long periods on PMR level doses don;t cause as much havoc as many doctors would have us believe - there are similar levels of diabetes, weight gain, every side effect except cataracts in patients who were on pred and patients of a similar age who weren't. Pred can't be blamed for everything.

The trick is to use pred well and get to as low a dose as possible without causing flares requiring high doses - and then you can stay on pred and have relief from the symptoms relatively safely.

[Gary1310 in reply to PMRpro]

My friend was diagnosed May,2018 and has been taken off Prednisone. My Rheumatologist said 8 months.

[PMRpro Ambassador in reply to Gary1310]

I have NO idea what world they live in. Not the one most rheumies, especially those who specialise in PMR and GCA, live in.

There is NO medical literature that claims under a year for PMR - perhaps they saw the single claim from some years ago that the average duration is 18 months and missed the 1 in front of the 8...

And the most recent evidence is in a study from Matteson et al at the Mayo. This group found that the average duration of PMR is 5.9 years. Some 40% of patients are on pred after 10 years - albeit at a low dose.

practicalpainmanagement.com...

and this is the link to the original paper:

ncbi.nlm.nih.gov/pubmed/287...

[Gary1310 in reply to PMRpro]

My Rheumatologist is reducing my dose, 1mg. Every 2 weeks...now down to 8 mg. I feel great,..so am thinking my Adrenals probably kicked in. I will continue to reduce but plan to keep my Prednisone very close to me, just in case.....Marshfield Clinic called me last week and said my last blood test was very good. I see them every other month. Rheumatologist did put me on a bone med...after a bone density test showed weak bones.

[Hidden in reply to Gary1310]

To my understanding, you are still at around the natural dose and suspect the adrenals don't fully 'know' yet...but you could be very lucky or unusual if they kicked in already as you dropped below 10mg. Its usually slightly lower before adrenals are even asked to start taking over the work pred does. That's why the tests are done much lower doses...under 5mg. It can take up to a year after pred to fully realise adrenals full support. Everyone is different so I wish you luck.

[PMRpro Ambassador in reply to Gary1310]

Your adrenal glands won't have needed to kick in just yet - see how you feel below 5mg! And many people do manage to get to 5mg in a year or so even just thinking of PMR symptoms - it is from here on it gets trickier.

[SnazzyD in reply to Gary1310]

Keep an open mind, it often hits around 7mg and below when the adrenals really need to pitch in but they still aren’t out of their pyjamas. I found the difference between 8 and 7 was quite big in terms of having enough ‘go juice’.

[Gary1310 in reply to PMRpro]

Thank you for this information.

[RheaV in reply to Gary1310]

At this point, I would reduce by .5 mg.

[Hidden in reply to Gary1310]

My GP said at least 2 yrs, Rheumy made no time promises and has even indicated it could be indefinitely....based on my individual needs re symptoms and markers etc.

3yrs 1mth, 6mg

[bunnymom in reply to Hidden]

I'm about where you are 3 yrs 5 months 6.5. 😀

[Rich7 in reply to PMRpro]

Probably splitting hairs, here, but I think the 5.95 years applies to the period since onset of PMR rather than the duration on pred.

Pred supposedly does not “cure” PMR, it just alleviates the symptoms while the condition runs it’s course. If that is the case, PMR will take whatever time it requires whether or not we take pred.

I wonder about this question because I was misdiagnosed for a long time before PMR was properly diagnosed. I like to think that the recovery clock started ticking when I actually contracted the condition, not when I first started taking pred.

I’m splitting hairs, aren’t I?

[Summerrental in reply to Rich7]

I was hoping that was the case because it took 1 yr & 10 months before I got diagnosed with PRM & that was only because I told Rheumy that I had all the symptoms of PRM, he said then I will put you on Prednisone. He had been treating me for Osteoarthritis prior to that. I was on 4 different drugs, none of them helped until the Prednisone.

[Hidden in reply to Rich7]

It's the median time people with pmr are TREATED with pred. Not the length of time PMR hangs around. The recovery clock In this model starts at Frist pred and ends at last. It is the median time.

mathsisfun.com/definitions/...

[PMRpro Ambassador in reply to Rich7]

Having read the paper - no it doesn't. It says quite clearly that it is the duration of management with corticosteroids. And yes, I am well aware - and frequently say - that pred cures nothing. The underlying cause of what we call PMR is in charge - and it can take from under a year to infinity to go away. 5% are said to have PMR for life.

I was undiagnosed for over 5 years. I've had PMR 15 yeas in total, been on pred for 10 years. Hasn't ever gone away in the time - at least, not long enough for me to be able to find out. So really - no, you aren't splitting hairs.

[Rich7 in reply to PMRpro]

Yes. I learned the fact that pred does not “cure” PMR from you. I have learned a lot from you, and I thank you for that.

Because the study only measured how long It took for patients to recover from PMR after receiving their first dose of pred, we still don’t know how long it takes a person to recover after contracting PMR, itself. However, since most people suffer from the disease for a period of time (often years) before getting a definitive diagnosis, and going on pred, we can assume that the researcher’s median number of 5.95 years is a low estimate of how long the condition persists. In reality, PMR probably lasts longer, on average.

[DorsetLady PMRGCAuk volunteer]

Unfortunately not as easy or simple as that - as others have advised!

To be honest, although you may want a definitive time frame for PMR, it doesn’t work like that- and the sooner you accept its fluidity the easier you will get through it.

[Purplecrow]

My rheumy told me having PMR meant I would be on Pred for a year. Unfortunately my PMR didnt get the memo, and at 6 years, I'm still on Prednisone.

Diagnosed 2013., currently 7 mg.

[Rimmy]

Most of us have reflected on this question many times - ie. the one when you ask yourself just 'when' did this all start ? I have come to think about it all differently now - after being a regular reader of the wisdom on this forum for a couple of years. While yes there is the 5.9 year figure which is good to put things into a realistic perspective (despite the expedited time frames some medicos seem fixated on ) it is difficult to wonder - well 'what about that year' I (think) I had at least some symptoms well before I even hobbled to the doctor. I recall fatigue and not feeling at all 'myself' for quite a long time before even the PMR aches and stiffness descended - followed by GCA. I think it must have been almost 12 months at least - and I have had a dx for 2 and a half years now - so I 'like' to think - I MUST be about 'halfway' through all this. But as others have said here the nearly 6 years is just an 'average' and in the end we are all individuals. The best news is we are meant to 'get better' or go into 'remission' - at least most of us - at some stage - and that's better than contemplating what is definitively a 'forever' condition (well fingers crossed that is) !

[Hidden in reply to Rimmy]

I think about that too. Over 3 yes in and reckon 1 to 2 years before. Sadly the 5.9yrs relates the pred treatment median, not length of PMR. 😒🤓

[PMRpro Ambassador in reply to Rimmy]

After 15 years of PMR symptoms or pred - I've given up wondering That is why I refuse to compromise on dose - or taking steroid-sparers. If I feel worse - that isn't an option and I go back to the drawing board!

[bunnymom in reply to PMRpro]

I totally understand quality of life in a new way.

[animalactivist]

Mine lasted about 4 years I never took steroids. It sort of burned itself out

[PMRpro Ambassador]

Not sure I'd entirely agree with the concept that pred masks almost any kind of inflamamtory pain - but what you do have to bear in mind is that PMR may have already gone into remission but adrenal function has not returned, That also requires a slow reduction which adds to the duration of management with pred.

[Hidden]

But surely we know that's part and parcel of long term steroid use for PMR. And why slow tapers are argued for here.

It's still treating the conditions caused by PMR by it's treatment. It seems an overcomplicated to argue and to Seperate pred use and adrenal insufficiency as distinct from ais. For me it is all most likely part of the pmr and pred experience. I expect my adrenals to take as long as they take to kick in as part of the primary treatment (pred).is reduced.

[PMRpro Ambassador]

Whether you can accept it or not is hardly the point. It is a fact for many people.

Nor is the statistic of how long patients required pred something that can be reduced if that is how long the underlying cause of their PMR continues. Nothing currently available will "cure" or change that. Pred is the management tool to allow a decent quality of life in the meantime. PMR is not a "self-perpetuating disease" - the pred has no effect on the underlying disease process at all.

Either you take pred and reduce it sensibly and carefully to find the lowest dose that works or you suffer the discomforts of unmanaged PMR and, at the same time, expose yourself to the risk that the inflammation will progress to GCA, it may not but it is more likely.

The purpose of the study that resulted in the median figure was to find how long PMR might last - and shows that PMR does NOT only last for a couple of years which too many doctors believe. It is a perfectly meaningful figure in that sense. Really don't understand where your problem with that is.