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@dadcue

Be patient and hopefully Kevzara works for you.

I didn't really know Actemra was working until I was able to reduce my prednisone dose. I found myself on 3 mg of prednisone and in uncharted waters. However, I wasn't having a flare or any increase in PMR symptoms. I had some pain but it was tolerable but it wasn't like I was "pain free."

I experienced overwhelming fatigue and was miserable but an endocrinologist said I should expect that because my cortisol level was low. Adrenal suppression is a side effect of long term prednisone use. My endocrinologist wanted me to stay on 3 mg of prednisone if I could until my cortisol level increased. My endocrinologist didn't know if my adrenals would produce more cortisol. I took prednisone for more than 12 years so my endocrinologist thought my adrenals might be permanently suppressed.

Slowly my fatigue and symptoms of a low cortisol level started to improve while I stayed on 3 mg of prednisone. It took more than 6 months before my endocrinologist said my cortisol level was adequate and it "might be safe" for me to stop taking prednisone. She added that I shouldn't hesitate to restart prednisone for any reason if I felt the need. She was concerned about an adrenal crisis but fortunately that didn't happen.

When I was on zero prednisone, my rheumatologist said PMR probably wasn't in remission yet but Actemra was controlling my symptoms instead of prednisone. I still take Actemra and my rheumatologist thinks being off prednisone and on Actemra is better for me.

My cortisol level is normal again but I still see an endocrinologist who is treating me for other residual prednisone side effects. Prednisone caused me to have a few hormone imbalances that led to metabolic changes. Actemra doesn't cause adrenal suppression so everything is improving gradually but my endocrinologist says it will take time for everything to improve assuming I can stay off prednisone. I have been off prednisone for 3 years and things are getting better.

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Replies to "Be patient and hopefully Kevzara works for you. I didn't really know Actemra was working until..."

You have a very involved endo dr. I’m jealous. I will keep trying to reduce the prednisone again and see how it goes.
I am so thankful for this site and other victims of this disease. When I share with others that I have this I get the blank stare and I totally understand that.
Again thank you.