How does PMR go away?

Bones, joints and muscles
1

I know this is risky, and some may go head-long toward any suggestion, but I am curious if anyone has had a good suspicion of what finally stopped their PMR. Of course those who have been "cured" may be no longer following these discussions. Some of us are willing to try any thought that is otherwise harmless.  It'll give us something to do between moans of exhaustion and aching.

2

Good question.  I am on 5m g. and do not have any pain at all  Could it have burnt out?  How do we know?  I just keep taking these awful steroids? 

3

https://patient.info/forums/discuss/zero-prednisone-discussion-450915

This was a thread started a while ago where people who had attained zero pred could share their stories.

4

PMR actually goes into remission, so it is still actually still there in the body and can rear its ugly head in the future if you are unlucky. Who knows why it decides to go into remission. One day some research might be done. 

5

I don't think anyone knows what causes any autoimmune disorder to go into remission - just like no-one really knows what triggers the immune system to go haywire in the first place and cause it. If they knew that - they could focus on a cure!

But - I must have a look at the mechanism of action of tocilizumab - because it seems to hit PMR and GCA into the long grass at least. Whether it is a permanent status remains to be seen though.

 

6

Then you should be reducing that 5mg dose in tiny steps - 1/2mg at a time and see if it is still enough to keep you pain-free.

That's how you find out if it has gone to play elsewhere: you can reduce to zero and still have no syptoms. Then you have to wait and see if it lasts - it does for most people but not all.

7

I will be very keen to know what you determine Eileen!

Given they are still conducting the long term efficacy of the drug we might have to wait a while to know if it sends PMR into remission or is a 'cure'!

8

Hi Ron, I was diagnosed with PMR April 2015 so I have had it for 20 months. I am now down to 1/2 mg of Prednisone alternating with 0 per day. I just started slowly tapering and when I felt comfortable at a dose I would reduce 1/2 mg. And stay there for sometimes 4 weeks then reduce another 1/2 mg. I also tried to eat a balanced healthy diet and kept up a good exercise program. My mothers PMR only lasted about a year so maybe that's why I have been fortunate to get this low. In another week I am going to take 1/2 mg every other day and see how it goes. But the key is slow slow reduction on the Prednisone.

Regards, Sharon