I had PMR age 60, resolution after 1 year of prednisone. Now, 9 years later, it’s back.Any others with a long interval between episodes?

[Joblow]

First time was after shingles vaccine; resolved and was able to taper off meds. Absolutely no problems for 9 years- thought it was gone for good. This time no obvious trigger except maybe stress.

[OutdoorsyGal]

Wow. Bummer.

Hope you made good use of those 9 years!

[Christophene47]

It is rare for PMR to completely be gone in 1 year. So my first thought is was that diagnosis correct. However, a lot of doctors, do represent it only lasts a year or so, but It is usually longer. If you had a nine year remission , it would be quite remarkable

What symptoms have returned?

[Joblow in reply to Christophene47]

Came across this site a few days ago, made me feel so much better! Yes, you doubters(you’re as bad as some rheumatologists): I indeed had PMR twice, 9 years apart. Pain- shoulders, back of neck worst, some hip. Nothing in feet or ankles. Knees most painful in the back when going to standing from sitting. Pain in my R jaw(which has always had a little ‘catch’ that didn’t bother)Various head/scalp/behind the ear/base of skull pains(not severe but made me worry about GCA)Turning over in bed the worst.Also felt “ill”.

Age 60, shingles vaccine, 4 days later PMR with elevated inflamatory markers-came on suddenly, couldn’t even lift my purse(don’t have/remember lab numbers) I remember my G.P. was sure I had a broken arm when I walked in and did an X-ray! Started prednisone: boom- pain free! Took tapering dose of prednisone over 12 mos and stopped.

Not a single indication of PMR over next 9 years.(I’m active person, ran a couple marathons, etc, in my 30’s, retired at 63 and started a huge garden with much digging, hauling,etc)

Age 69 hip started to bother me, slow progression to shoulders, back of knees. When I couldn’t roll over in bed I knew it was PMR, back to haunt me. This time, no elevated sedimentation rate or anything else(in fact, remarkably low). Because I was certain the shingles vaccine had triggered the first episode, I tried to figure out what was new with me. I had various cuts/scratches from gardening, mosquitoe bites...not new;I had recently applied a herbicide to a section of my lawn, and I had recently despaired of my life amounting to anything good because of trouble with my adult son with aspergers. Ambassador on this site mentioned accumulated stressors being a possible trigger for PMR, and that makes sense to me.

So now I am on prednisone 10mg/day-which, once again, made my pain go away like magic- and methotrexate.

Of course I hope I will be lucky again and able to quit medication in a year. We’ll see.

[PMRpro Ambassador in reply to Joblow]

Everyone I know who has had PMR twice says the two episodes were totally different. In every respect.

[Joblow in reply to PMRpro]

Well, except for differences in labs, and onset rate, mine was the same.

[PMRpro Ambassador in reply to Joblow]

Was that good or bad?

[steppers]

I first had PMR in my late 50's and was on Prednisolone for 15 months. The PMR returned just over 4 years later. Whilst it is relatively rare for it to happen again after so many years it does happen. An American specialist published statistics on this a few years back and that showed one of his patients had PMR 5 times.

I have had PMR diagnosed three times, but am currently in remission.

[PMRpro Ambassador]

For some years the received wisdom has been that people who have a very short episode of PMR are more likely to have a relapse later.

[MhairiP in reply to PMRpro]

That doesn't bode well for me! 😱

[PMRpro Ambassador in reply to MhairiP]

I think it is often a case that someone is able to get off pred while the autoimmune part is at a low level of activity and then later it ramps up again - the predisposition for a/i disease remains lifelong, it isn;t cure, it is remission.

[MhairiP in reply to PMRpro]

Oh well - I'll just go with the flow!

[PMRpro Ambassador in reply to MhairiP]

All we can do ...

[Suedeshayes]

Hi. Can I just ask what your tapering plan was? I’m also not sure how I will know when the pmg actually goes?

Thanks Sue

[PMRpro Ambassador in reply to Suedeshayes]

You will know the underlying cause of the PMR has burnt out and gone into remission when you are able to reduce the dose of pred to zero and the symptoms don't return. Until then you will need at least a small amount of pred to manage the inflammation - and it may be as little as 1mg.

[Suedeshayes in reply to PMRpro]

So you have to continue with slow taper whether or not you know if inflammation gone or not? Or not so much gone, but maybe a much lower dose could be sufficient, but you adhere to slow taper anyway? Sue

[PMRpro Ambassador in reply to Suedeshayes]

Basically - for 2 reasons: first of all you cannot know if the inflammation has gone, the lack of raised blood markers can only show that there is no inflammation present while you are at this dose of pred. That is not the same as the cause of the inflammation no longer being active and for that there is not yet a marker. You also cannot know in advance what dose of pred is enough - there is no way of predicting that because there are so many variables from the bioavailability of pred for you to the activity of YOUR personal a/i disease.

And secondly, after a couple of years on pred and reaching a pred dose in single figures, you also have to encourage the return of normal adrenal function. Most doctors will say this usually returns if you reduce the dose slowly enough, others now question that, but one certain fact is that it must return in order for you to be able to stop taking an artificial corticosteroid..

[Suedeshayes in reply to PMRpro]

Thank you. I appreciate your reply. Sue

[Joblow in reply to Suedeshayes]

Hi Sue- don’t remember exact taper from 9 yrs ago, just that I started on 10 mg.

[Robinsnest72]

Wow! I too developed PMR after shingles vaccine. I am into my 8th month and at 11mg pred and am still suffering. Reducing 1mg per month. You were lucky to get off ored

[Joblow in reply to Robinsnest72]

We should start a class action against the vaccine maker