PMR?

[daworm]

2008 had a similar episode but worse, I was becoming almost paralyzed with stiffness and pain. Couldn't even lift a milk jug or hardly sit on the toilet..started in Nov with a swollen knee and feeling like I was coming down with something...it got worse from nov to xmas when I was miserable..GP had me on Mobic and Norco, I had to sleep in a chair many night...I finally told her that I had to see a specialist, she got me into a rheumatologist who ran many blood tests, nothing much came back but a higher than normal TSH value, all he said was to start on levoxyle and he also started on prednisone..I know I wasn't on the pred very long but can't remember how long..he thought it was all thyroid related I guess, anyway I slowly got better and returned to work in March,...that was ten years or so ago...I worked as a millwright/heavy equipment repair in mining and have always been a weight lifter/active person..I'm now 68 and retired..five weeks ago I went for checkup and told dr. that my shoulder joint was sore and I had trouble lifting my arm over head...bursitis, put on Mobic...a couple of days later it spread across my upper back to other shoulder and both arms..stiff and sore..legs getting involved too..went back to dr and said if feels the same as ten years ago only to as bad yet..I had a bottle of pred that the rheumy had gave me and he had had told me if I ever feel this coming on to start with 15mg right away..we'll my new dr didn't like that idea and ordered blood work...I had inflammation showing so he finally said to start with 15mg of pred if you feel better in a day or two he thinks it's PMR...well I did feel better..really better the first day...now I'm on my third week and the soreness and stiffness is back, not as bad, but still there especially in the morning...the miracle of the first few days is sorta gone..haha...Rambling on, here's my question...does anyone take a small bit of ibuprofen to help the pred as the day goes on....when should I see another rheumatologist, my mind keeps buzzing that it may be something else or that I have CGA..I only get CGA symptoms when I read about it! Sorry, dr told me not to be an internet hypochondriac but I seem to be one..anyway after all that rambling, I like this site..live in Michigan, maybe it would be worth it to go to Mayo's for my own piece of mind...DOES THIS MAKE ANY SENSE haha. Just trying an indrotuction post..I got lots of questions when I think about it.....thanks

[PMRpro Ambassador]

My first comment is more a question - have you gone back to doing heavy work once the pred kicked in? If so - that could be the answer.

The pred just manages the inflammation it doesn't cure anything - your muscles remain intolerant of acute exercise and can be easily fatigued so you have to do your bit with pacing and resting - rest as much as you do things is a general guide.

For most of us ordinary painkillers don't make much difference - and you shouldn't really mix NSAIDs and pred (ibuprofen is an NSAID).

And see that bottle of pred your rheumy gave you? Take it to a pharmacy - it'll be WAAAAY out of date!

[daworm in reply to PMRpro]

Haha, yah my dr laughed at it (old bottle) and said, let's get some fresh stuff...no heavy work..finally retired..learned the lesson of trying too much the other day..wow, what a crappy day the day after that..I didn't say in my long post that I have some OA going on in knees, nothing too bad ..Tylenol seems to help somewhat and I know that prescription pain meds aren't supposed to help much but they seem to help me..I never over do them, probably take less than I'm supposed (Vicodin 3 times a day) at the most I take one, sometimes a half...if nothing else it helps my mood..68 yrs old I'm not worried about using them...all med have many side effects, especially this prednisone...what I really want is for a dr to say, "you have PMR" and something else..PMR I can live with if I don't have to worry about "other" conditions..

[PMRpro Ambassador in reply to daworm]

A new study has found that the side effects of pred at PMR doses are minimal:

practicalpainmanagement.com...

The senior author (Eric Matteson) is a top expert in GCA/PMR - which is why he's making a thing of it. There is such a level of terror about using pred on the part of the doctors, both GPs and specialists. And he is at the Mayo at Rochester.

So - show the article to your GP if he's being silly about pred - and see if you can get to the Mayo if he is difficult.

[daworm in reply to PMRpro]

Thank you very much..actually I don't seem to have many side effects, can't tell if it is pred or PMR..

[PMRpro Ambassador in reply to daworm]

Well yes - many PMR problems are listed as pred side effects when they are not. However there are side effects you can't feel or see.

[DorsetLady PMRGCAuk volunteer in reply to daworm]

Hi,

Actually Pred doesn't have that many more side effects than other medication, and certainly not as serious as others. It gets a bad rap, but unfairly so, sometimes.

OA pain may be helped with painkillers, I was on them during my GCA journey, certainly when I got to lower doses - prescribed by doctor. However, they won't do anything for the PMR as such, although should you get withdrawal symptoms when you begin to taper they may then.

If your dose is not lasting all day, then either

a. it's not high enough,

b. your body is not getting the full benefit of the dose, or,

c. as PMRpro says you're trying to do too much.

You really do have to pace yourself, ok you may not be doing heavy work like before, but just normal living is too much with PMR.

Lots of people get the miracle reaction for a few days, and think they are back to normal only to find a week or so it's not quite so good. The Pred may be controlling the inflammation caused by PMR, but the PMR is still there causing fatigue, and less resilient muscles.

If you want a second opinion, then you are certainly entitled to one, so if it will ease your mind go for it.

[SheffieldJane]

Hi daworm and welcome. It does sound like PMR and it also seems that 15 mgs was not enough to zap the inflammation entirely. I would advise a couple of weeks at least on 20 mgs to show it who's boss, then a very gradual taper. You also need to remember that you cannot operate as before, for the duration your muscles will not tolerate the very heavy work. You need to really pace yourself now.

[daworm]

I'm thinking that too..15 seems to be a standard start but it isn't working wonders..maybe I expect all morning stiffness and soreness to be gone, it isn't..and I'm SLOWLY learning about feeling good and doing to much..thanks...I think I will contact my dr or ask to see a rheumy.

[Hindags in reply to daworm]

If morning stiffness/pain s your biggest complaint you might talk to your MD about Rayos, a delayed release Pred that you take at night . It starts working around in the early morning before the inflammatory process begins. It has helped me wake without pain or stiffness.