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
Danrower Hardy100
Posted
Hi Hardy,
A lot to unpack .
Fellow American in Florida here.
I would like to think that the symptoms of PMR are curable, but prednisone simply helps manage the symptoms. It does not bring us any closer to remission. I've had remission twice, each lasting for years, only to have this unwelcome companion reappear. I think it is an autoimmune disorder, the inclination towards it will be with those that have it, till the end. Sad, but true.
I'm a realist. And on 2.5 mg / day. Minor symptoms.
You are in the right place, there are some authentic professors here who will sort this for you.
I have found that the rheumatologists here in the US are woefully ignorant of PMR and RS3PE.
Best of luck,
Dan
Hardy100 Danrower
Posted
Thanks, Dan, i agree with your observation about our rheumies here. My first one just wanted to reduce the pred as quickly as possible urging me to just grin and bear it. I switched to another one who had significantly more experience with PMR patients. Together we managed the pain, not just the pred.
Hardy
ptolemy Hardy100
Posted
I shudder when I hear some of the stories about rheumies!
EileenH Hardy100
Posted
One is left to ask why he diagnosed PMR, gave you pred and then took it away? You could have ginned and borne it from the start Some of the then are just clueless...
Michdonn ptolemy
Posted
As some of you know my Rheumy rushing me off Prednisone, right into a flare. I to increase my Pred from 7 to 30 mg little by little to get relief. Then try to rush me down from the 30mg, I stopped taking her advice and have used the DSNS method ever since. She doesn't understand and is clueless. I manage my own dosage and go to the Rheumy for a prescription. For the life of me I do not understand why they do not keep up with what is going on in they field. You have take control, think positive, stay active and try to smile. 🙂
ptolemy Michdonn
Posted
It is so easy for them when they are not the one in pain. One day they may learn.
Michdonn ptolemy
Posted
Just one day ptolemy, I love to her to have one day like the day my wife had to move my legs so I could go to the bathroom . I live with pain hell I will go the .specialist for my left leg and I'm skiing now with cracked ribs. I got to take better care of myself. 🙂🙂🙂
ptolemy Michdonn
Posted
Cracked ribs, that does sound painful and there is nothing much you can do except stop breathing!!
EileenH ptolemy
Posted
For some reason physiotherapists aren't too keen on that ...
Michdonn ptolemy
Posted
or stop skiing both of which I am not doing. It more painful to ride to the ski hills, than to ski. For some reason once I start skiing, no pain! I don't know where it goes, but I wish it would stay there.
EileenH Hardy100
Posted
PMR is said to be a "self limiting" disorder which means the underlying autoimmune (a/i) disorder that causes the symptoms we call PMR eventually burns out and goes into remission. For probably 95% of patients that does happen but it can be anything from under 2 years for less than 20% of patients to well into double figures. The median duration of management with corticosteroids is 5.9 years according to a recent study from rheumatologists at the Mayo.
Why does it go? No-one knows - no more do they know what causes the immune system to go haywire in the first place. The pred doesn't have any effect on the disease process itself, it just relieves the inflammation it causes and so provides relief from the pain and stiffness allowing a better quality of life in the meantime.
This seems likely that the activity of the a/i disorder varies over time, creating more inflammation at times and less at others - when it is less active you can manage on less pred, if it becomes more active you need more. As you reduce you may overshoot the dose you need - and then the symptoms re-emerge. You are never reducing relentlessly to zero - you start at a dose that is considered enough to manage all the vagaries of PMR: activity of the underlying disease, bioavailability (how much of the oral dose you absorb), weight and other variables. Then you reduce the dose to find the lowest dose that manages the symptoms as well as the starting dose did. It is a standard procedure called titration often used to adjust some drugs where there isn't a standard dose.
Exercise probably doesn't affect the disease - but the disease process continues to be active in the background, attacking the body tissues in error being unable to recognise it as "self" and makes the muscles intolerant of acute exercise. Overdo it and they will develop delayed onset muscle soreness that is more severe than you are used to and which may last longer before resolving. Pacing and resting is required to avoid sore muscles.
Have I covered it all? SAy if I haven;t 😉
Hardy100 EileenH
Posted
Yes, you covered it beautifully. Thanks. There seems to be much we don't know about PMR.
Just a few more questions....
What is the incidence of PMR (ie how many people get it)? And does it vary by ethic group or country? I've tried researching this on the internet without success.
Hardy
Anhaga Hardy100
Posted
One time I found a list of countries with the information, but when I looked more closely it seemed the figures were simply extrapolated from what was known in countries like the US. Couldn't find it when looking just now, Will post a link to an interesting article, which I hope will be approved, which has some info about epidemiology.
Anhaga
Posted
https://emedicine.medscape.com/article/332483-overview
EileenH Hardy100
Posted
The main studies were done in Olmsted County, Minnesota - and that is where a lot of the figures are derived from purely because those US medical records were used. It is particularly common there because of the high level of Scandinavian heritage. In Europe the rate is highest in Norway and lowest in Italy. Strangely, Norway is much higher than Sweden which is right next door but there is a study that says they found a much higher rate in Sweden, in line with a high rate found in Denmark - but there are no figures to be seen easily.
https://www.clinexprheumatol.org/article.asp?a=1748
Figures quoted in various articles are 50+ per 100,00- population in the USA, as low as 12 per 100,000 in southern Italy. I found a study recently (sorry, it won't turn up when I want it!) that showed that for nearly 400 white patients there were only 4 Asian and 4 black (African-American heritage) so it is practically unknown in those ethicities wherever they live.
Anhaga
Posted
It's a pity the link was deleted. If I can find it again I'll private message it to you.
I thought they were supposed to be a bit more lenient with links from reliable sources now. 😠
Anhaga EileenH
Posted
I searched polymyalgia epidemiology (and) med scape (one word)
Anhaga
Posted
I searched polymyalgia epidemiology (and) med scape (one word)
EileenH Anhaga
Posted
https://emedicine.medscape.com/article/330815-overview
Blowed if I can see why that wouldn't be allowed...
Mind you - I wonder if the Italian figure is low because all the nonnas think that is what you are meant to feel like????
Anhaga EileenH
Posted
Well it got approved just now! But why not when I posted it?
Danrower Anhaga
Posted
Great Article. One to give folks who have questions! Thanks for posting
EileenH Anhaga
Posted
Because the computer automatically captures posts with a link and a moderator must then approve it. I actually reported it having been deleted to the boss mod because there was no reason at all for it not to be allowed since it was directly related to the forum content, in answer to a question and extremely useful. Learning curve for the inexperienced maybe??????
Anhaga EileenH
Posted
My comment must not have been clear - why was your link approved and mine not? My link remains deleted, but it doesn't matter as it's now available through your reply.
Emis_Moderator Anhaga
Posted
I've reinstated/approved the link even though Eileen reposted, was a case of human error. I'll let the other moderators know medscape links should not get deleted.
Regards,
Alan
Anhaga Emis_Moderator
Posted
Thanks. Learning curve....