Muscle pain again

[Amber1414]

I would really like to know if I am alone. After what seems like forever, I weaned myself off of Prednisone, slowly but the right way. After only 3 weeks I start with the same crap as before. I can't walk up the stairs without a huge effort. It was the first sign that I had PMR, about 6 years ago. I have been in remission for quite awhile so took my time and weaned off the Prednisone. It's as if I can't exist without at least a mg or 2

[MrsNails]

Hi Amber

Did you see Prof Dasgupta’s Webinar? He talked about keeping his patients on a very low dose of Pred 2mg indefinitely to prevent relapses.....

You sound as if you may fall into that category, l’ll attach the link shortly.

Best Wishes

MrsN

vimeo.com/430085218

[PMRpro Ambassador]

"I have been in remission for quite awhile"

No you haven't, you are not in true remission until you can stop the pred and the symptoms don't return. As long as you are taking some pred, even 1mg, that may be enough to manage the small amount of daily inflammation being created and your story is not unusual. For some people it can take a few months for the inflammation to build up enough to cause symptoms again which suggests to me that you definitely need 1mg ongoing. It is perfectly safe - so if that is all you need, take it and be grateful to have got so low.

As MrsNails has said, Prof Dasgupta says he often keeps patients on 2-3 mg long term as it seems to prevent relapses.

[SheffieldJane]

A number of people experience this. Professor Dasgupta ( renowned in the field) has said some people will always need a small dose, for life. 2 mgs is negligible for side effects. If that’s what you need, that’s what you need.

[Yellowbluebell]

To be fair 1or2 mg is such a small amount and doesn't cause the problems associated with high doses of pred its a shame some people are scared to stay on the maintenance dose. I would willingly accept such a small dose for ever for no pain.

[DianeA1]

My experience exactly! In July, I had 12 wonderful days at zero and then felt the same old dreaded pains in my shoulders. I bumped up to 5 mgs to get a grip, and tapered by 1mg/day, stayed at 1mg for a couple of days and now in August I am on .5/day.

You can find some interesting posts on this website about this happening to others.

All the best