PMR returns - maybe?

[palewolf]

It is just over 2 years since I took my last pred, having been on them for 2 1/2 years. Over the last year I have suffered with chronic low back pain, and just lately I'm getting pain in my hips, neck and shoulder. All my pain is worse at night. I am stiff and achy during the day too, though only mild compared to nights.

I just wondered if it could be pmr coming back as my symptoms are similar to how it started before.

Has anyone had a recurrence years later?

[PMRpro Ambassador]

Could well be - and yes, PMR can wake up again after a few years, I know several who have had it twice, anything from from 2 years later to several years. The only constant is they all say it is totally different from one episode to the next! Not sure what percentage do get it twice. It is complicated because doctors don't differentiate about relapses because of tapering the dose too quickly at the start, getting patients to stop pred when they are at 1mg and then symptoms reappearing in a few months or patients being off pred for a couple of years like you (or more) but tend to lump it all together. Some sources claim half of patients have a relapse/recurrence by 5 years - which I don't believe for a moment.

But don't leave it too long before asking the GP for a trial of pred.

[PMRpro Ambassador in reply to PMRpro]

This is quite interesting:

hcplive.com/view/uncovering...

where they say

"Nune explained the prognosis for polymyalgia rheumatica is one where 3 in 5 patients achieve remission after 18 months to 2 years of corticosteroid therapy. However, half of these patients relapse during the first year and 1 in 4 patients require treatment for 4-8 years."

That half of patients who "relapse during the first year" were never fully in remission - and stopped taking pred when staying on even 1/2mg of pred would have prevented the recurrence of symptoms when the inflammation build up slowly over time until enough tp cause problems. Nor do I believe his "3 in 5" - how many of the those patients just put up with the pain because the doctor said it wasn't PMR now?

But don't expect to get tocilizumab or Kevzara in the UK - it ain't going to happen any time soon ...

[palewolf in reply to PMRpro]

Thanks PMRpro for your reply. When i came off pred in Dec 2020 I had tapered very very slowly, and I was fine up until Feb last year (2022) when I slipped on the ice and landed heavily on my bottom which set off my low back pain, which has become chronic. My pain is very bad at night, not so bad in day. I have seen specialists and pysios, had x-rays, ultrasounds and an MRI in July this year (I have a telephone appointment today to get the results (Yes, over 2 months to wait for the results!) I know my lower back is in pretty bad shape from all the tests I've had and have been told it's osteoathritis in my spine. It's just that over the last month or so I've been getting pains in my neck, hip and left shoulder as well as back pain, which made me wonder if the PMR was coming back. I will ask the specialist today if I can have a blood test to check ESR and CRP levels. I did ask my GP once if it could be PMR returning but she dismissed it (surprise surprise). I will mention it again, but I wanted to find out if anyone else has been revisited so I have some facts to back it up with! Once again thanks for your advice.

[PMRpro Ambassador in reply to palewolf]

And exactly WHY would you dismiss the idea of PMR returning in a patient who has had it before? Even after it is burned out and you manage off pred for 6 months, the propensity for it to flare up again remains for life.

However - it is also possible that the fall triggered myofascial pain syndrome in much the same way a whiplash can. You could possibly differentiate between that and PMR with pred - oral pred doesn't have much effect for me - but any doctor or physio (probably better) should be able to identify spasmed back muscles. Doctors in the UK dismiss back pain far too lightly - and it becomes entrenched. In the meantime - maybe try 800mg ibuprofen (which is a flooding dose and then you top it up if the pain shows any sign of returning) and try heat over the sore area., heat pad or hot water bottle. That is my go-to when desperate.