If PMR has gone/burned out???
Just curious
Oh, I don't have PMR, I have Palindromic Rheumatism. Treated with steroids, very similar symptoms to PMR, just a lot rarer! I had to tell my consultant what I had - he thought PMR - I educated him!
Stay safe foks
Only sure way to know it’s to get to zero, stay there with no return of symptoms.
I woke up one day when on about 1.5mg (GCA, no PMR) and just felt different - cannot say exactly how other than it felt as if a weight had been lifted from me …GCA gone, or adrenals finally working or a combination of both I don’t know, but certainly a change.
As I wasn’t 100% sure, I continued slow taper to zero -with the hoped for results…
In remission 6 years this month.
It sounds to be such a wonderful feeling. 6 years - wow!
I can only imagine that you get to zero Pred and a significant time goes past without symptoms that appear to be worsening. I wouldn’t expect to feel great, I think about a year will go by while your Adrenal system recovers and your muscles strengthen. Of course wear and tear pains may pop up and arthritis may claim prime position. There will be some get fit activity to incorporate into our routines, good diet, weight bearing exercise etc. As you see, I am not really asking for a lot except that it will be better than it is now with a chance of that being the general trajectory and that will take some work. We’ve got a lot of lost time to make up. 🌈
You are able to reduce without flares or PMR symptoms and finally get off pred altogether without symptoms returning in less than maybe 9 months.
Unfortunately it doesn't take its leave with fanfares and waving wildly ...
I’m also here with a rare case of Adult Onset Stills Disease due to overlapping symptoms. Diagnosed at 17, now 60 and Pred free since mid 20s I now only take pain relief. I assume my illness was monophasic as it’s never needed hospital treatment or heavy duty drugs again however I wouldn’t say it’s burnt out even after 40 odd years as I’m still stiff, sore and swollen in my wrists and knees with wider mobility issues in my hips and shoulders due to stiffness. In the last 10 years other AI illnesses have appeared such as IC and LS which are steroid treated. In fact rather than burnt out I feel a slow slide into needing medication to keep going which is odd given the attack was just one big one. I’m grateful for being as well as I am the empathy I find here. Wishing you a good day Ziggy.
