PMR Review

[Dcctrains]

I have had PMR for 25 years and I suspect each person has a very different experience.

[PMRpro Ambassador]

Gosh someone who's had PMR longer than me!! And you must have been a similar age when it started? I do wish they would get a group of us together and look at "our" version of PMR.

Did you mean this to be a reply to an existing thread? It seems a bit out of context.

[Dcctrains in reply to PMRpro]

PMRpro, sorry yes. It was as an addition to the review that, I think, “Chanel” wrote, although I can no longer find the thread. My computer appears to be doing silly things.

[PMRpro Ambassador in reply to Dcctrains]

I might not blame your computer - HU does this every so often we suspect!!!

This one?

healthunlocked.com/pmrgcauk...

If you know who wrote a post, you can find it by searching the name under Members - just below the big banner at the top of the page. Or scrolling through the past posts at the bottom of the page.

[Pixix in reply to PMRpro]

A lady in our village has had it for at least 35 years. She was diagnosed after a few years of suffering, she’d just had her first baby, &couldn’t cope at all, was confined to the sofa,as she put it, & it wasn’t the first thing they thought of…much like your experience! She made us blinds & curtains, (her job, working from home) & we chatted…at the time I’d just been diagnosed with fibromyalgia…& she told me her polymyalgia story! Fast forward 10 years & I had my PMR diagnosis, so when I saw her I asked more questions! She’d been on 7mg pred constantly for, I think,about 30 years! Nobody seemed to make any effort to taper, but she didn’t know much about it. Sadly, two years ago, she had a slight fall, but broke her back…since then other bones have broken. Guess it’s likely she never had a dexa scan. I lost contact with her at pandemic time, but she waves when she passes me!!

[Singr in reply to PMRpro]

Definitely. The existing book just doesn’t fit.

[Nextoneplease]

Gosh Dcctrains, that’s amazing! And not in a good way, I’m sure 🥺

How are you now? Hope you’re reasonably well despite everything x

[Dcctrains in reply to Nextoneplease]

In the middle of a massive flare. Up from 5mg Prednisolone to 20mg Prednisolone per day for 3 weeks, the 15mg for3 weeks. Over the last 25 years, this has been the worst flare. Why ido not know

[Nextoneplease in reply to Dcctrains]

Sorry to hear that Dcctrains 😟

Take care and hope you feel better soon xx

[Dcctrains in reply to Nextoneplease]

No worries, I am in excellent hands. Tks

[PMRpro Ambassador in reply to Dcctrains]

Do you think the flare was from overshooting the dose you need? Have the flares come at similar doses each time? Or after you had been at a given dose for a while?

We don't subscribe to the "back to the beginning" approach for the flare due to overshooting while tapering. Adding 5mg for up to 2 weeks is usually plenty and then you can drop back to a bit above where it happened. So much less demoralising when it happens.

The other sort of flare, due to disease activity increasing for some reason, may need the back to the start approach but for me, these sort of flares are more like a relapse of the illness itself. They happen to people who have got off pred altogether and they can happen after anything from 8 months or years pred-free. I say 8 months - when it is less it is because the underlying autoimmune disorder had never gone away. And they happen to us too - I find often because of stress but one of mine came from nowhere while on holiday! I have always struggled to get under about 10mg but that time I'd managed to get to 4mg and been there a while.

[Dcctrains in reply to PMRpro]

I have been on 5mg Prednisolone per day plus 160mg DEPO every 3 to4 months for more than 20 years. I appear not to be able to get to below 5mg Prednisolone, although did try on several occasions, always failing. My Rheumatologist has taken the latest steps and who am I to object.

[Lanakay in reply to PMRpro]

I was off prednisone completely for about a year. Last week had to go back up to 5 mg. It felt like my body was filled up with cement. Much better now. My rheumatologist said to take the 5 mg for 10 days. Hope the pain doesn’t come right back I could hardly walk. I was first diagnosed in 2017.

[Dydee]

Oh my, 20, 25, 30 years??? I can't imagine that. I have been on the PMR roller coaster since June 2020. Recently managed to taper down to alternating 1/2 mg and 1 mg each, every other day. Had started to ache again but in all leg muscles and all shoulder and arm muscles but blamed our current project renovating a little house and going up and down a step stool to paint. My original symptoms were just shoulders and upper arms plus hips and thighs, horrible achiness and weakness. So I figured at 82 maybe the work was too much for the old body. But then it dawned on me that perhaps I had gone below my need for Prednisone so 2 nights I upped it to 3 mg and I believe I feel a tad better. Will stay there for a few days then go back to 2 mg where I was good. But then I got to wondering if the Pred wouldn't work for other types of inflammation too? Arthritis, bursitis, etc.?

[PMRpro Ambassador in reply to Dydee]

It does sometimes mask OA pain - because it is now being realised that that is also due to inflammation. Bursitis is also part of PMR so don't dismiss that your symptoms are due to PMR.

For a flare due to overshooting, we suggest adding 5mg to the dose where you flare for 7 days, up to 14 days if you need it. Then drop back to the dose you were good at. Only going to 3mg is a bit neither here nor there in terms of clearing out the accumulated inflammation. You need a good spring clean or you will find yourself walking a tightrope.

And oh dear - I fear the idea of an 82 year old going up and down a stepstool will give me nightmares!

[Dydee in reply to PMRpro]

LOL Sure don't want you to have nightmares. I have always been very active and in good shape until PMR hit and so far my balance is still pretty good. I use a 3 step stool with a platform top and high back to hold on to if I need it. And seldom use the top step. At least I'm moving and not sitting at the computer all day. Deep sigh. Thank you for the reminder about the 5mg. I will up my dose then. Unfortunately, when not climbing step stools I am sitting, really bad for the back and bursitis. Daughter finally moving out after 3 years so will be finishing the refurb of my own home. That should keep me busy.

[PMRpro Ambassador in reply to Dydee]

Too many years associated with the NHS and a predilection for medical docusoaps which ensure I know some scary statistics maybe!

One in 4 over 65s will end up in the ED after a fall and however fit you feel, the reality is that, if you do fall, your bones just don't bounce like they used to! Having broken, they don't HEAL like they used to. My very fit 55 year old neighbour whose hobbies were mountain biking and hiking up at the 2000m level, slipped on water in her kitchen a couple of years ago. That fall from standing resulted in a broken ankle, damaged hip and smashed shoulder - and well over a year recovery time to be able to work again as a tailoress. She still isn't able to walk as she used to.

[Dydee in reply to PMRpro]

I do understand and thank you for the reminder. I have a bit of experience with that. 2 years ago I tripped on the bottom end of a sloped curb that was unmarked at a wheelchair walkway coming out of the Emergency Room. Saw the curb and thought I had cleared it, fell and fractured my wrist, left one thankfully. Everything else was fine but even after surgery my hand will never work right.