Some PMR Questions
Posted , 19 users are following.
Hi,
I’ve been monitoring this wonderfully informative forum since i developed PMR just over a year ago. My primary physician started me on 40 mg of Pred which I was able to reduce down to 20 mg over six weeks when I had my first appointment with a Rheumy. I’m now down to 8 1/2 mg. I’m 76, male and live in the United States.
I’m never totally pain free, especially in the morning. About six months ago, however, I did wake up completely pain free and that lasted for almost two days. I thought at the time that I was rid of the PMR, but after the pain returned it was clear that I had mistakenly taken a couple of 10 mg pills thinking they were 5 mg.
I do have some basic PMR Questions.
If one didn’t take any Pred, would PMR eventually go away? I would assume so.
I’ve assumed that the “strength” (if that’s the right word) of the PMR disease decreases over time, since the amount of Pred required to be pain free (or relatively pain free) decreases as well over time. So, hypothetically, if one stayed at a specific Pred dose, would the strength of the PMR disease continue to decrease? and is that why one is able to decrease Pred? Again I would assume yes.
I guess the question is: what exactly makes PMR eventually go away? Is it just a question of time? Or does the Pred dosage have anything to do with it? Also, does too much exercise cause the PMR to strengthen, ie. flare up? If so, why?
A related question is: when PMR flares up (because of reducing Pred too quickly), is the PMR disease actually strengthening? Or does it just seem to be doing so?
Thank you,
Hardy
1 like, 41 replies
wendy64238 Hardy100
Posted
I am a 56 year old female in New Zealand. I had PMR for many years. I battled on with the extreme pain thinking that my demanding job was to blame (house keeping business). Sometimes when I were not so busy the pain would be extreme. I could not work it out. I went to a doctor for an unrelated matter, she questioned my limping etc and put me on 20mg pred. By the end of the day I were pain free.
That makes me think IT WILL NOT CURE ITSELF.
Before the prednizone I were going to many massage people to give some relief, it just got worse.
I thought it would be wonderful to have a massage now I were pain free with the predizone. I were wrong. It was as though the pred masked the pain because as the lady worked on me I could feel all of my pain again. Two bad weeks again.
So answer to your question about flair ups, I think the pred just masks the pain
For me anything could flair it up. Sitting for long periods is worse than excersize. I have just started doing aqua gym. Excersize in water. It is wonderful.
My doctor told me when I started the prednizone that I needed to lower the dose and also feel no pain. She said my brain needed to forget the pain.
I were down to 1.5 pred after 4 years and did the DSNS method from 7 mg. I have recently gone back up to 2mg.
For me I do not think the symptoms decrease. I think you just need the right dose of pred. Even at 1.5 mg I could certainly tell if I had forgotten a dose.
I lead a normal very active life( I run a backpacker lodge with no staff). Because it is hard to understand PMR I do not feel like I am injured when I am in pain, I just carry on a normal day as sitting or lying down does nothing to help. Distraction is a great thing.
Hardy100 wendy64238
Posted
Recently I did some exercise in a warm pool and, yes, it all felt good. I've also played some golf last fall, but have to take a golf cart whereas before i used to be able to walk the course or at least nine holes.
I envy you living in NZ. Such a gorgeous country.
EileenH wendy64238
Posted
"She said my brain needed to forget the pain" - that old tripe!
Your problem with the massage may well have been that you also have myofascial pain syndrome (MPS) - caused by the same inflammatory substances as PMR but located in the muscle fascia and trigger points in large muscles. When you have a massage or manual mobilisation of the trigger points that releases the cytokines into the system and they make you feel as if the PMR is flaring. I have both PMR and MPS and have massage which I find helps in the long run. It is started relatively gently and then she ramps up the technique. I may feel rubbish for a day or two but gentle exercise and drinking plenty of water AND being on the right dose of pred results in an improvement quite quickly that then lasts for a considerable time.
The symptoms we call PMR are not the disorder - they are the symptoms of an underlying problem. The pred doesn't cure anything, it mops up the inflammation to reduce long term damage to tissues and the symptoms - but the autoimmune disorder continues in the background. The symptoms decrease while you are on enough pred - but not otherwise. And that allows you to have a normal life - I wouldn't say PMR stops me enjoying life. It is different, but it is good.
wendy64238 EileenH
Posted
Thank you for that information Eileen. Maybe one day I could have a relaxing massage. I will look into MPS.
wendy64238 Hardy100
Posted
Yes I am lucky to be in a small town in New Zealand. I cannot imagine coping with PMR in a big city when it is a struggle to get anywhere. To go to the Aqua classes I only have to drive 5 mins down the road and will usually only pass two other cars.
margot34956 wendy64238
Posted
Just wanted to say Hi to you Wendy and great to read your post, getting down to 1.5mg
I am also from New Zealand and also 56 years old.
I haven't come accross anyone else from N.Z on this forum so wanted to say Hi to you
Enjoy your day
wendy64238 margot34956
Posted
Hi Margot. Great to hear from you
ackagee margot34956
Posted
Well, here's another Kiwi with PMR. Diagnosed in September 2017, started on 40 (!) mg Pred, currently on 7.5 mg on the DSNS taper. 4 flares along the way. I know of several other Kiwis with PMR, maybe they'll pop up and introduce themselves ?
margot34956 ackagee
Posted
Great to hear from you ackagee
I was diagnosed in Oct 2017
All the best to you
Janst margot34956
Posted
Hello Margot,
I am also from NZ & have PMR & GCA. I know a few others with PMR here, so you are not alone
margot34956 Janst
Posted
Hi to you too Janst, nice to hear from you.
Nice to know I am not alone. That's 4 of us that I know about.
Such a lovely lot of people to meet on this forum!
Michdonn Hardy100
Posted
Hardy100, also a US, New Mexico citizen, I believe EileenH covered PMR from start to finish, if there is a finish. I try to stay active, try not to over do it, but continue push a little more each day. Stay positive and I believe a smile helps. Good luck on the rest of your PMR journey . 🙂
Janst Hardy100
Posted
Untreated PMR can lead to GCA, which can cause blindness, so you dont want to consider not taking the pred.
As I understand things, pred controls the inflammation & the disease still rages on in the background. It never goes away, but most people do go into remission; the median time for this is 5.9 years.
When you get a flare, it just means that the pred dose is too low to handle the inflammation.
Danrower Janst
Posted
I had not heard that, Janst. My understanding was there was a correlation for PMR and GCA, with prednisone being common treatment. Unsupressed PMR increasing probability of GCA? Hmmm. Good question.
Send in the Gurus.
EileenH Danrower
Posted
PMR and GCA are basically thought by most experts to be two expressions of the same disease at differing points on a broad spectrum. Between there is probably large vessel vasculitis. Untreated PMR is 7x more likely to progress to become GCA - as the inflammation causes increasing damage in some cases.
Then there is the heavy-duty guru:
https://academic.oup.com/rheumatology/article/56/4/506/2631560