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Anyone have discomfort or pain when tapering off prednisone?

Polymyalgia Rheumatica (PMR) | Last Active: Sep 22 7:45pm | Replies (144)
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@linda7

I just started on Kevzara. I did my research on it including reading the report of the phase 3 clinical trials. Yes, there is a rare side effect of the bowel which my rheumatologist explained to me. I don't have any known bowel issues. I also had to have a special test for tuberculosis. The drug hasn't been around very long and it does affect the immune system so there could be a cancer risk. This is all explained in the drug literature. I decided that it was worth the low known risk. I have been on prednisone over 2.5 years. Methotrexate initially helped me to reduce my prednisone but then did not seem to help and I had side effects, including elevated liver enzymes. I also did not like the way the methotrexate made me feel. I was taken off the MTX as soon as I started the Kevzara. I feel a lot more "normal" after 11 days on the K. I'm glad to be off the MTX. So far, so good. Will report back if I have problems.

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Replies to "I just started on Kevzara. I did my research on it including reading the report of..."
DadCue | @dadcue | Jun 2 7:31pm

Don't expect an immediate change when starting Kevzara but try to be optimistic. Kevzara doesn't come with any guarantees but I think it is something worth trying.

I started Actemra five years ago for refractory PMR. I wasn't able to taper off prednisone until a year later. I tapered my prednisone dose by 1 mg per month for the first 3 months down to 7 mg. I wasn't optimistic that Actemra would work because of how many times my symptoms returned when I reached 7 mg. I figured a flare was inevitable so I tapered by 1 mg per week. Surprise ... no flare and I found myself in uncharted territory on 3 mg of prednisone.

I was aware of the "adrenal issue" so I contacted my rheumatologist to see what I should do. My cortisol level was checked and it was low so my rheumatologist said I shouldn't taper any lower than 3 mg.

I was referred to an endocrinologist who wanted me to stay on 3 mg until my cortisol level improved. I stayed on 3 mg for six months when my endocrinologist said my cortisol level was "adequate." My endocrinologist said she wasn't sure what would happen if I stopped taking prednisone but she encouraged me to try. She said I could go back on prednisone if I "felt the need."

There was a need to restart prednisone the first time I stopped prednisone. The second time was a breeze and now I have been off prednisone for 3 years.

Good Luck ...your experience with Kevzara may be different than my experience with Actemra. I still do a monthly infusion of Actemra. All my Prednisone related side effects are gone or are improving.

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