"I hate to say this - my endocrinologist said I didn't need to taper prednisone from 3 mg to zero as long as my cortisol level was adequate. So much for slow tapers ... I guess."
Addendum to the above. I'm getting into addendums.
My endocrinologist also said she didn't know what would happen if I decided to stop taking Prednisone. There was no way to predict what would happen but I think she was more concerned about adrenal insufficiency. My cortisol level was adequate on the day it was tested but might not be adequate every day going forward. She said it was my choice but she strongly encouraged me to "give it a try."
There were competing voices that said I should stay on Prednisone for the rest of my life. My endocrinologist said I could always go back on Prednisone "if I felt the need." My endocrinologist said lifelong Prednisone was not a good outcome.
@jlo2252
You might appreciate what happened next more than most.
After I tapered off Prednisone the first time, there was a need for 60 mg of Prednisone again because of a massive flare of panuveitis. It was my first uveitis flare in 15 years. A different biologic (Humira) was tried which probably worked for uveitis but my PMR symptoms returned. I was stuck on 15 mg of Prednisone again until Actemra was restarted.
It was a temporary setback. I was able to taper my Prednisone dose from 15 mg to zero in 3 months the second time Actemra was tried.
@dadcue
So glad that you are finally off the prednisone because of the Actemra. This gives me hope for my own fight to get off prednisone! Here’s hoping you will now be free forever of uveitis! I only had it once and I just remember them putting three different bottles of eye drops in my eyes and it was a painful experience 🥲
Sounds like you have great health insurance! It’s so good to have that confidence in the people in charge of your health.
Have you discussed your concerns about being on Actemra for so long with your doctor? When you have medical training like yours it’s so easy to think the worst! I know I’m like that sometimes and at times this can make me a difficult patient, although I really try not to be! 🙂