How long does PMR last?

[David_H]

Now I know the answer to this is nobody knows and it varies from person to person but I wondered if there had been any analysis done and stats derived from this web site and others that show min/ avg/ max lengths of 'suffering'?

[DorsetLady PMRGCAuk volunteer]

Ahh...the million dollar question! Short answer - don't think so. Might be difficult, because I think lots probably leave site once they are on low or zero Pred.

Food for thought though. You could suggest a Poll to the powers that be.

[PMRpro Ambassador]

Eight years ago when I first started with this lark on the forums (I'd had PMR for 5 years already) I read a paper where they reckoned that 25% of patients are off pred in under 2 years. 50% take up to 4 to 6 years to get off pred and the other 25% take longer, sometimes even remaining on pred for life. Of course, the lifers may be on pred because of poor adrenal function so that is perhaps a bit skewed. However those figures fit fairly well with what I have seen on the forums - assuming them to be fairly representative overall.

This paper

clinexprheumatol.org/articl...

by a top Italian group (Salvarini is regarded as the grandad of PMR research here) found that a third of patients were still on pred after 6 years - whether they had been put on methotrexate or not.

The standard German rheumatology textbook quotes an average duration of pred of 5 years - note AVERAGE, some longer, some shorter.

I have also been variously told of people who had had PMR for 11, 13 and 15 years when they finally got off pred. So there is hope however long you have been on pred unless you have proven dodgy adrenal function.

There is some thought that there are at least 3 and possibly 4 different versions of PMR, short term, moderate and chronic versions. And possibly a reactive sort - a very short version in response to an infection which goes once the infection is cleared.

[SusanEleven in reply to PMRpro]

My mother had a male neighbor who seems to have had the short version. I spoke to him about his experience. When he was diagnosed he refused to go on pred (he's diabetic and worried about how the pred would affect him) until he showed up for a business appointment and people had to lift him out of his car seat. That finally convinced him he couldn't "tough it out" and he started 15 mg pred. He was off completely in less than a year, no problems and no issues since. He was surprised when I told him he was the exception not the rule.

[Fracham]

I have just come off Preds after 7 years.

[PMRPete]

I did pretty well; just on 4 years.

[blackstone1]

I was in a Swiss clinic in February for my bronchiectasis. One of the junior doctors there was making PMR his special study as he is intrigued by the fugitive nature of the illness. He told me that there was a direct relation to the amount of pred taken at the beginning. Statistically a higher dose at the beginning equals a shorter stint.

Unfortunately this cannot be made up later and I opted for the smallest possible dose.

[HeronNS in reply to blackstone1]

I wonder if that is really true, Blackstone. We often hear about people started on a higher than normal dose who have great difficulty tapering. And your other comment - does that relate to the fact that it's the total lifetime intake of pred which is considered significant? I agree with you, the less one can manage on the better, even if it does drag things out a few months longer.

[PMRpro Ambassador in reply to HeronNS]

I think it is being suspected - they used to use about 30mg starting dose and then the "pred horrors" convinced them to go lower. Now they are recommending up to 25mg. One lady who has had it twice started on 30mg the first time and had a very straightforward journey, second time it was 15mg and a very convoluted path.

It will only matter if they can identify a role where pred has an effect on the disease process. Pred works via the neutrophils in some way - and neutrophils have been found to be a marker for the inflammation. Is there an effect of the disease process when a higher dose is used and not at lower doses?

The other aspect is whether delayed diagnosis and treatment means you are more likely to have a long and difficult journey?

[HeronNS in reply to PMRpro]

I guess when "higher " was mentioned I was thinking about the people I know who've been started on levels closer to the lower end of GCA treatment. The woman I met here, for example, who couldn't seem to get below 35 mg, and we've heard from others on the forum having similar trouble. Could be that the 15 I started on was "high" for my weight? Because I remember thinking that maybe 10 would have worked for me as I had no trouble dropping the first 5 mg over the course of 5 weeks. And don't forget I'd been sickening with PMR for well over a year by then, so delayed diagnosis. It's interesting, isn't it, that after several generations of people have been treated with the same med we still don't really know the best way to use it. And, of course, there's still that thing about which kind of PMR does an individual have and maybe one kind is better with a lower dose, another with a higher.

Today, after several days of taking loratadine for allergies, has been third morning with no headache, so a simple solution after all. Tapering continues.

[PMRpro Ambassador in reply to HeronNS]

More likely I would think is that people who need more than 30mg and then struggle is that there is something else going on besides the PMR. Or not even PMR.

[HeronNS in reply to PMRpro]

So the problem there is that the too high dose wiped out the diagnostic evidence a good response, or poor response, to a lower dose would have provided?

[PMRpro Ambassador in reply to HeronNS]

There is a lot of disagreement nowadays as to whether a dramatic response to pred is proof it is really is PMR - but yes, low doses often do work in PMR but not in, for example, inflammatory arthritis.

I suppose if you found a good response with 15mg you could then say, probably PMR so here is a higher dose for a couple of weeks to hit it hard. Though I do know patients where that was done and it didn't make much difference.

[HeronNS in reply to PMRpro]

It does seem like shots in the dark. Doesn't inspire confidence! Once again I feel gratitude to my doctor for letting me taper in my own way at my own speed, in spite of her recent suggestion I just stop and see what happens!

[TooSore in reply to PMRpro]

I wondered if the delay in diagnosis affected the time line. I also have wondered when doctors in the USA say 2 years as a magic number, do they mean from the onset of symptoms or from diagnosis and treatment. I'm not sure why they seem stuck on 2 years anyway! I seem sensitive to the slightest change in dose so am going slowly, making the rheumatologist shrug at me. I also think the doctors assume that when you're younger you will have an easier time. They forget about raising kids and working that go along with that! I've been told that since I'm in medication I should be able to do anything I normally do but then when I have an issue from doing too much I get told I have to remember I have PMR - they don't even realize they're talking out of both sides of their mouth. And I like this doctor- he listens to me and is being careful.

[PMRpro Ambassador in reply to TooSore]

Doesn't work either way in my experience! The occasional patient is off in a couple of year - no more than that.

I like that idea - talking out of both sides of their mouth! And it doesn't seem to go via their brains either sometimes!

[podo]

Still going after 15 years! After my first bout, I was off Pred for 19 months until it started again, have been off Pred three more times since then but intervals to flares getting shorter each time. Now on 5mg and reducing VERY slowly, will try to get to 4mg by end 2017, have a six month rest and then try to reduce to 3mg by end 2018 (when I'm 80). If this all goes to plan I might stay at 3mg but am always tempted to try to get lower, especially since I have had a Gastric Ulcer & been diagnosed with Glaucoma since being on this medication! Since Docs can't tell us when inflammation is gone, it's a bit trial & error. Am always trying to push the boundaries! Who knows, there might be a "cure" one day if we hang on long enough.