Connect
← Return to How did you cope with the side effects tapering off prednisone?
Discussion
How did you cope with the side effects tapering off prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 26 4:21pm | Replies (187)Comment receiving replies
I started last November at 10mg which gave me a lot of relief (and hope) almost instantly. After about 3 weeks it didn’t seem as effective and my rheumatologist increased it to 15. I had energy all through January. The side effects were increased insomnia (a problem I already had) and weight gain. The trouble began when my rheumatologist said I needed to start tapering. I went from 15 to 10 with no problem but when I got below 10 all my pain especially in my shoulders and knees began to come back. I made it down to 7.5 at the beginning of March but at 5mg now I can hardly get around. I play handbells and the movements are so painful for my shoulders and biceps. I am feeling kind of hopeless because it’s also difficult to dress myself. I don’t know what to do. I don’t have to get off the steroids. I just started to experience the skin tears on my left forearm. I wish they would come up with some medicine that does the same thing as steroids without side effects..
Replies to "I started last November at 10mg which gave me a lot of relief (and hope) almost..."
I am dismayed by the pain some experience because of bad tapering advice. If you felt okay at 10 mgs., I would go back to that, stabilize and then try a very slow taper. Dropping to 9.5, stabilize (make sure you feel reasonably well) and then drop to 9. No rush, you're body will tell you when it's okay to lower the dose. If you drop too fast, inflammation will accumulate and you'll have a flare. Remember, PMR lasts 5.9 years (on average according to Mayo studies). Many docs think it only lasts two years and try to taper us based on that faulty belief. We have to listen to our bodies and not follow a tapering scheme unless it works for us. Recently I tried to drop from 10 to 7.5 (something I normally wouldn't do or suggest) due to an upcoming surgery. I was actually pretty good for maybe a week and then the pain and stiffness increased each day until I was nearly as bad as when I was diagnosed. We can't rush it. Prednisone only covers PMR pain. The PMR is still there until it isn't. I'm 2.5 years in and waiting for that day.
Connect
@mzamyl, I struggled my first time around with PMR and took 3 and half years to taper off and had problems gaining weight. Six years later my PMR came back but this time I made some lifestyle and diet changes which I think really helped me to taper off of prednisone in 1 and half years. Here's some tips if you haven't already tried them -- Polymyalgia Rheumatica Diet: Do's and Don'ts - Healthline: https://www.healthline.com/health/polymyalgia-rheumatica-diet