Kevzara, how does it kick in ?

Actemra didn't exactly "kick in" all of a sudden. I assume people respond to Kevzara in much the same way.

I was very skeptical that anything else could work as well as Prednisone. Actemra didn't magically make all of my pain go away when I first started. I slowly tapered my Prednisone dose by 1 mg per month during my first 3 months on Actemra. I usually had a flare whenever I reached 7 mg of Prednisone but that didn't happen when I was on Actemra.

After 3 months, I put Actemra to the test when I was at 7 mg. I tapered by 1 mg per week down to 3 mg. Imagine how surprised I was when my PMR pain didn't return. I still had some pain but I considered it to be "normal pain" and not PMR pain.

When I was on 3 mg of Prednisone, I didn't feel so well. It wasn't pain so much as "overwhelming fatigue." My rheumatologist was also surprised that I tapered so quickly to 3 mg. My doctor was concerned about adrenal insufficiency so an a.m. cortisol was checked. When my cortisol level was low --- I needed to stay on 3 mg of Prednisone for 6 months until my cortisol improved. An endocrinologist was the doctor who actually gave me the okay to discontinue Prednisone.

@dadcue
I like your detailed info. Do you keep a journal or is your memory really good?

@mlz

I have never kept a medical journal but they can be helpful. I review my electronic medical records when I don't remember something. I had access to all my doctors over the years so I communicated with them frequently. I was a nurse at the same teaching hospital where I received my medical care. I would get questions answered sometimes while I was working.

The University Hospital where I worked was an early adopter of electronic medical records. Old paper records were also entered into the system. Most of the doctors liked to teach so it was a good environment to learn.

As a nurse, I was a good listener. I still remember some of the interactions with many of my patients. I could relate to them from a patient's level.

Since I worked at a teaching hospital, I had to be a good listener which helped me to learn a few things directly for doctors. I made patient rounds with doctors. I needed to know about my patients. During rounds, I was often the person being asked what questions the patient had so I could relay the answers. When I didn't know an answer to a question, I wasn't shy about relaying the question to the doctor,

Another thing the helps me to remember was how traumatic things were for me. Some of the things will be hard to forget.

@mlz

I have never kept a medical journal but they can be helpful. I review my electronic medical records when I don't remember something. I had access to all my doctors over the years so I communicated with them frequently. I was a nurse at the same teaching hospital where I received my medical care. I would get questions answered sometimes while I was working.

The University Hospital where I worked was an early adopter of electronic medical records. Old paper records were also entered into the system. Most of the doctors liked to teach so it was a good environment to learn.

As a nurse, I was a good listener. I still remember some of the interactions with many of my patients. I could relate to them from a patient's level.

Since I worked at a teaching hospital, I had to be a good listener which helped me to learn a few things directly for doctors. I made patient rounds with doctors. I needed to know about my patients. During rounds, I was often the person being asked what questions the patient had so I could relay the answers. When I didn't know an answer to a question, I wasn't shy about relaying the question to the doctor,

Another thing the helps me to remember was how traumatic things were for me. Some of the things will be hard to forget.

I'm at the same point as you. Just took my 5th dose of kevzara and decreased the prednisone to 6.mg. For the last week I've noticed feeling so much better! Only slight shoulder pain. Sleeping undisturbed. So grateful something is working.