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DiscussionHow long has PMR lasted - I'm trying to find the average
Polymyalgia Rheumatica (PMR) | Last Active: Dec 26, 2023 | Replies (136)Comment receiving replies
Replies to "I don’t know if that was the cause of the flair but my rheumatologist wants me..."
I have tapered off prednisone when on Actemra ... not Kevzara.
Kevzara works on the same inflammation pathway as Actemra so these two biologics should work approximately the same way.
Every person is different so I can't say every person will respond the same way to treatment with either Kevzara or Actemra..
When I tapered off prednisone while taking Actemra --- I tapered by 1 mg per month for the first 3 months. I was starting from 10 mg of prednisone so it took 3 months to get to 7 mg.
I was surprised by not having my PMR symptoms return because 7 mg of prednisone was where I usually had problems. I "believed" Actemra was helping PMR but I didn't know for sure. I wanted to put my belief to a test so I started to taper by 1 mg per week. In 4 weeks I went from 7 mg to 3 mg.
I was in "uncharted waters" when I was able to stay on 3 mg of prednisone. I had pain but I didn't think it was PMR pain. I attributed the pain to arthritis.
On 3 mg of prednisone, I didn't feel well. I was dizzy whenever I stood up too rapidly. My blood pressure was low so some of my blood pressure medications were stopped by my primary care doctor.
I asked my rheumatologist what to do and explained to him how I felt. I didn't think my symptoms were PMR symptoms. My rheumatologist checked my a.m. cortisol level when I was taking 3 mg of prednisone. My cortisol level was low so I was told to stay on 3 mg of prednisone until I could be seen by an endocrinologist.
When I saw an endocrinologist 3 months later, "technically" I was still taking 3 mg of prednisone. During the 3 months waiting for my endocrinology appointment I was "experimenting" with my prednisone dose. I don't recommend doing this. I did some fast tapers to zero and then back up to 3 mg just to see how I felt. I repeated this several times. I stayed close to 3 mg most of the time. I told the endocrinologist about doing these fast tapers and how I felt so I didn't keep it a secret.
My endocrinologist explained to me what "could happen" if I tapered off too soon. She reviewed my medical history and was amazed by how long I was on prednisone (12 years). My endocrinolgist rechecked my a.m. cortisol level at my first visit and verified that it was still low. I was told to stay on 3 mg with a followup visit scheduled 3 months later.
Three months later, my endocrinologist rechecked my a.m. cortisol level again. This time she thought my cortisol level was "adequate." I was instructed on what could happen when I discontinued prednisone. My endocrinologist said she didn't know what would happen. My endocrinologist thought it "might be okay" to discontinue prednisone and gave me a direct number to call her "if anything happened." She wanted to know about everything.
My endocrinologist said it would be okay to take prednisone again "if I felt the need." My endocrinologist said preferably I should call her before taking prednisone again but she didn't require that I call her first. She said she wanted to know about anything that happened when I stopped prednisone.
What happened after I stopped prednisone was completely unexpected. I needed 60 mg of prednisone again. My ophthalmologist prescribed prednisone for uveitis. It was a temporary setback while other things were tried. After about 4 more months I was off prednisone again.
I have successfully stayed off prednisone ever since except for when Actemra was stopped. I have taken Actemra for 4 years without any difficulty except for minor lab abnormalities. I had lab abnormalities on prednisone too.
I have a history of multiple autoimmune conditions including PMR. Actemra has kept everything in remission when I remain on Actemra. I don't know when or if Actemra will be stopped.
Sorry for the LONG story.
If you went straight from 7.5mg a day to 5mg I would think a flare was inevitable. That's way too much of a drop at once when you're below 10mg. I would definitely get a script for 1mg tablets.