PMR - Polymyalgeria Rheumatica is back

joyful164

Haven't been on for ages I know. Just back for a moan really because I am fed up.
Have had a really bad flare up since I got abck from hols in July.
My previous GP (now retired) wanted to keep me on a small caretaking dose of Preds - 2 1/2 mg.a day. Then my new gp together with my consultant decided that I didn't need to be on steroids, in fact, had I got PMR at all.
So, since travelling adventure around Norway I have got gradually worse until the pain is quite unbearable. I cannot afford to be bad with this now. So much to do.
Today I start 15mg Preds again and cut down over a period of 1 month this time.
The only good thing about this appt with gp is my BP is down
40 over 60 , wow. never been that low all my life.

right here goes. Hopefully, by Monday I shall feel a bit better.

Good luck all you guys

Joy

sharmaine

Hi Joyful

Sorry to hear about your flare up and it's understandable that you are fed up. My Father in law has just been diagnosed with this condition. Now that he's taking his meds he feels really well. He lost a lot of weight - we're hoping he'll put on a few pounds now that he's feeling a bit better. He's taking the maximum dosage of steroids now.

How can they make one diagnosis and change their minds? Are they going to do more tests?

I do hope you get sorted out soon because this is not a nice condition at all.

With warm regards
Sharmaine

joyful164 wrote:

Haven't been on for ages I know. Just back for a moan really because I am fed up.
Have had a really bad flare up since I got abck from hols in July.
My previous GP (now retired) wanted to keep me on a small caretaking dose of Preds - 2 1/2 mg.a day. Then my new gp together with my consultant decided that I didn't need to be on steroids, in fact, had I got PMR at all.
So, since travelling adventure around Norway I have got gradually worse until the pain is quite unbearable. I cannot afford to be bad with this now. So much to do.
Today I start 15mg Preds again and cut down over a period of 1 month this time.
The only good thing about this appt with gp is my BP is down
40 over 60 , wow. never been that low all my life.

right here goes. Hopefully, by Monday I shall feel a bit better.

Good luck all you guys

Joy

skezier

Hi Joy,

Hell that's is low. 40 and i start to feel like I am about to black out so are you feeling ok? I really hope the preds do their job and when do you see the consultant again? Its wrong isn't it that they change their minds and mess with our tablets and I hope they will be dutifully sorry they did change it.

Feel better soon Joy and nice to see you. ((( ))) xx

annie_mial

Hi Joy, sorry you have another flare starting; 15mg Pred reducing to how much over a month? Don't let them con you into dropping too quickly, especially as you have a busy October coming along.

I'm told the current thinking is that PMR never goes away, but like all other arther conditions can simmer down and go into remission. Then when other factors pop up, it rears it's ugly head again. No doubt they will change their minds yet again and we will be back to square one.

I have to say my old Rheumy was on the ball - she told me that I was never likely to be completely free of it and 9 years down the line I believe her. Don't know what the new Rheumy will make of it all. He hasn't said much so far (except that he thinks I've got RA and Fibro to boot) so waiting for next appointment with bated breath. However, he did put me on amytrip which is helping a lot, specially in the mornings.

Hope the paintings and the exhibition is successful!

Annie

frogmorton

It IS good to see you Joy

Glad you have got some help before it gets that you can't cope.

You take care and I want to hear all about the exhibition

LOve

Toni xx