Connect
Comment receiving replies
Hi thanks
I’m 67 and live in the uk . I’m used to getting up and going in the mornings, now bits at least 10 am before I can do anything
The steroids are spacing me out , my sleep patterns are all over the place and I’m gaining weight .
This is playing havoc with my moods
I have a doctors appointment today so will see what she says
Has anyone had any luck with changing thier diet to avoid carbs etc
The morning pain varies at best it’s a fluey like feeling and at worse it’s bad pain
Replies to "Hi thanks I’m 67 and live in the uk . I’m used to getting up and..."
I would be interested in what a UK doctor tells a newly diagnosed PMR patient.
Is this your second visit with the same doctor or are you being referred to a rheumatologist?
The "guidelines" for the treatment of PMR are subject to interpretation. Some doctors regard the "recommendations" to be rules. Those doctors tend not to listen to the patient.
The guidelines for the treatment of PMR are summarized in the following link.
https://emedicine.medscape.com/article/330815-guidelines
There are tabs at the bottom of the link that discuss treatment options and the problems associated with long term corticosteroids. I think in the USA the approach is to encourage patients to taper off prednisone as soon as possible.
There doesn't seem to be any tapering regimen that works for everyone. I got off Prednisone but it took me more than 12 years. I didn't have any success tapering off Prednisone until a biologic called Actemra (tocilizumab) was tried. It only took me a year to taper off Prednisone after the biologic was started back in 2019.
Prednisone was good for my pain but it was very hard on my body. That was what my rheumatologist told me and she tried everything to get me off Prednisone.
My rheumatologist was my best ally but these forums are helpful too. My rheumatologist and I allied together and we finally found something that worked for me.
Prednisone caused major sleep issues for me. Now I am back to normal after tapering off. Drinking tart cherry juice really helps any lingering pain. Really!
Connect
Hello @anncoco57, I would like to add my welcome to Connect along with @nyxygirl and others. Changing my diet and lowering the amount of carbs I take in definitely helped me in my second time around with PMR and I was able to taper off of prednisone in 1-1/2 years vs 3-1/2 years the first time with PMR. It also helped me lose 40+ pounds and keep it off which has been a life long struggle for me with weight. There is another discussion which you might find helpful.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?
https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/