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@grownupcf

I wasn't very optimistic about Actemra because of all the negative feedback I received from another PMR forum. I tapered by 1 mg per week just so I would get the "inevitable flare" over with and I could move on. My lack of optimism probably hindered me from getting off prednisone sooner. I was convinced that taking Prednisone for the rest of my life was probably my best option.

I was pessimistic even when the endocrinologist told me 3 mg was a low dose that I could simply stop taking Prednisone as long as PMR was controlled AND my cortisol level was within the normal range. It wasn't optimism so much as it was a huge leap of faith that I would not have an adrenal crisis.

It was my nature to be too pessimistic when I needed to be more optimistic. Long term prednisone use and chronic pain made me pessimistic. I was naive to think that prednisone wasn't causing me to have some serious health consequences. Then someone addressed this issue with me after she woke up out of a coma after a bowel perforation with a subsequent adrenal crisis from her long term prednisone use.

The person I'm referring to died but she lived long enough to change everything about how I felt about Prednisone. I wish I had known that person too when I was first diagnosed with PMR. She would have been happy that I got off Prednisone when someone else was telling me to take Prednisone for the rest of my life.
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Replies to "@grownupcf I wasn't very optimistic about Actemra because of all the negative feedback I received from..."

@dadcue Thank you. And I'm sorry for the loss of your friend. Thankfully she left you with an important message.
I think both of my doctors are more aggressive on getting off prednisone, and after some time, I realized I needed to be as well. So jumped on the chance to take Kevzara. My optimism (and my partner's) was that it would work, and the prednisone would be gone, and we'd live happily ever after.

That could be the case. I just need to give it some time. I'm impatient. I lived with PMR for way too long before I got treatment and was hoping it would "go away in 2 years," which is what a doctor told a friend who has it. He is older and in a much different health space than I, but it was what I preferred to hear (and actually some of the first things I read without digging into the details).

Then my doctor enlightened me. As did this group. Grateful. ☺️