@bettebaldwin

I agree with you about everything although my outcome is different. I had personal experience with adrenal insufficiency after being on prednisone for more than 12 years to treat PMR. It has been more than 5 years since my last prednisone dose. I recovered from adrenal insufficiency and I haven't had any PMR relapses. Technically, I still have PMR and my treatment for PMR is ongoing without prednisone.

My PMR journey was very long and arduous but now I'm in a better place. For many years I was stuck in the doldrums. It wasn't a good place because of all the flares. Even on the calm days, I was slowly wasting away not to mention all the new onset prednisone side effects. My quality of life wasn't very good.

I was encouraged that the rheumatologist, endocrinolgist and nurse in the UK sounded exactly like my doctors here in the USA. My doctors weren't experts but their message was the same. After PMR was diagnosed, my treatment was to take prednisone, achieve remission, and then, after a year or two, taper off prednisone. That was the plan anyway.

The treatment plan for PMR/GCA with prednisone is fundamentally flawed in my opinion. There is room for improvement. The plan works for half the people but the other half struggles. The back-up plan is to continue prednisone, taper more slowly and wait for PMR to burn itself out. This is the stage where something needs to change. I didn't take prednisone for 2 years only to find out I might be dependent on prednisone. My doctors said that wasn't the outcome we were striving for. They started Methotrexate, Leflunomide and every alternative to prednisone they could think of. The goal was to discontinue prednisone eventually.

Eventually came for me in 2019 when Actemra (tocilizumab) was tried. That was when I parted ways with the PMRGCAuk forum. The forum is excellent and we all seem to share the same experiences.

There wasn't much support for biologics because prednisone was the "only option" and my doctors in the USA were "breaking the rules." It was better to take the "devil I knew" instead of Actemra. As I later found out, Actemra was not a devil at all.

I found out it was relatively easy to quickly taper to a lower dose prednisone with Actemra onboard. I got out of the doldrums and made some progress. Things were going in the right direction.

Recovery from adrenal insufficiency was the next battle. I stayed on 3 mg of Prednisone for a long time while I waited for my adrenals to recover. Notice the parallel to "wait for PMR to burn itself out." However, the adrenals won't recover on too much prednisone!

In any case, I learned the difference between symptoms of PMR and adrenal insufficiency because Actemra prevented PMR flares. I still had some pain and discomfort so it wasn't completely gone. My endocrinologist said I should resist the urge to take more prednisone but I could if I needed to. My adrenals started to recover while I was able to stay on 3 mg of prednisone. My adrenals fully recovered after prednisone was discontinued.

None of the above was as easy as it sounds. It took at least two years for my adrenals to recover from prednisone as my symptoms of adrenal insufficiency slowly resolved. Prednisone side effects slowly improved too. I was able to discontinue other medications that were treating my side effects from long term prednisone use.

I think the advocacy for PMR/GCA needs to change from "long term" prednisone to "alternatives" to prednisone. I admit there is a long way to go still. I think the concept is being embraced more readily in the USA.