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i have come off steroids after 11 years, am finding it very difficult
Polymyalgia Rheumatica (PMR) | Last Active: May 27, 2023 | Replies (17)Comment receiving replies
thankyou for your reply . Are you better now back to normal? I spent years going from 8mg of Prednisone per day and down to 3mg then up again then down..I then had an eye scare and they put me on 60mg for a month which didnt help and my eye slowly got better..After that enormous raise of steroids i decided that had to be it and i tapered off down to 2mg taking 12 days. Then I had a double fracture in my foot which took 6 months to heal (probably caused by the steroids). So in February having reduced to nil i came off the steroids. All of this since September. I had not heard of Actema ..so shall see if I can get some help.
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First, I wish to say that it takes fortitude to come off prednisone like that. On the other hand, it isn't entirely safe to taper off so quickly without guidance from a doctor. I want to stress that an endocrinologist may be useful at this stage. Your having problems between 3 mg and 8 mg of prednisone is consistent with a low cortisol level and secondary adrenal insufficiency from long term prednisone use.
An endocrinologist told me when it "might be safe" to stop taking prednisone after being on it for 12 years. She was very adamant that I should take prednisone again for any reason if I 'felt the need". She went into great detail about what I should do if the need for more prednisone arose. She wouldn't predict what would happen because she had no way of knowing. She just said that I could call her directly if I needed prednisone again because she wanted to know about it.
As it turned out, I also had an "eye scare" within a week of coming off prednisone for the first time in 12 years. I also needed to go back on 60 mg of prednisone and that completely demoralized me. I understand that feeling and things were looking bleak to say the least.
My eye problem turned out to be a temporary setback. My ophthalmologist, rheumatologist and endocrinologist all weighed in and provided me some options that didn't involve long term prednisone again.
I listened to all of my doctors. I tried a different biologic for a few months that my ophthalmologist said would be optimal for my eye problem which wasn't GCA. My eye problem was something else that can cause blindness and my ophthalmologist didn't think Actemra would be the best treatment for it.
The second biologic I tried didn't work for PMR as the pain came back and I was unable to taper any lower than 15 mg of prednisone again. My endocrinologist was concerned and said prednisone wasn't helping with my problem with adrenal insufficiency and encouraged me to taper lower.
My rheumatologist finally said that it would impossible to adequately treat everything that was going on. So no, I'm not completely back to normal but infinitely better off than when I was taking prednisone for everything.
My rheumatologist eventually provided me with a couple of choices and let me decide what I wanted to do next. I'm happy with my choice to go back on Actemra again.
My quality of life in much better now that I have been off prednisone for a couple of years.. I have been able to stay off prednisone and most things are improving rather than getting worse.