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@tweetypie13
This all took place over a conversation, of praise, thank yous etc.
Update…..today saw Rehumy…..🎂 to me…. 🥂
Stated/plead my case….to 🛑 Kevzara
Good blood work for months
Pain free for ages
2 yr anniversary of onset PMR was like GREAT
11 months on Kevzara
Last 4months at 3 wk interval and no pain (why not give it a try?)
What more of a taper is there really to do?
Healthy active and 79yo female way ahead of the average patient at my age.
No other medical issues.
Dr……Ok…..🛑 Kevzara, re test blood 2 months (5/4)
Assuming no issues
Re test blood 2 months ( 7/5 )
Follow up appt 7/15
Lesson I continue to learn is…
YOU ARE YOUR OWN ADVOCATE.
I did my homework, was prepared….
Thx to you all for your support and I’m going to continue my support to you.
J
Replies to "@tweetypie13 This all took place over a conversation, of praise, thank yous etc. Update…..today saw Rehumy…..🎂..."
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@tweetypie13
Good luck ... I think you should go for it. The follow-up labs and visits sound reasonable.
Don't expect any sudden changes. It takes a while for Kevzara to be eliminated from the body so if your symptoms return it should only be gradual.
"Kevzara Half-Life & Duration
Half-Life: The terminal half-life is concentration-dependent, measured at approximately 8 days for the 150 mg dose and 10 days for the 200 mg dose at steady state. Some sources indicate a longer, average elimination half-life of 21 days at steady state.
Time to Clear the Body: Following the last steady-state dose, it takes roughly 28 days (for 150 mg) to 43 days (for 200 mg) for the drug to reach nondetectable levels."
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I have experience with stopping Actemra but not in a very controlled way. Actemra was "interrupted" once during Covid because of a shortage. It was 6 months before supplies improved. I had to go back on Prednisone again after about 3 months from my last injection of Actemra. My symptoms weren't that bad but my inflammation markers were increasing.
My other experience was more of a "trial" just to see how long I could go without an injection. I gradually stretched it to almost 4 weeks but I couldn't stand the increasing lower back pain.
A synovial cyst formed on my lumbar spine so surgery was being planned. I needed to be off Actemra for a month before surgery and a month after surgery but that wasn't going to happen with Actemra injections.
The idea was to switch to a monthly infusion of Actemra with the hope I could go 2 months between infusions with surgery in the middle. After Actemra infusions were started the synovial cyst on my lumbar spine was reabsorbed. It could have been a coincidence but it is rare for a lumbar synovial cyst to be spontaneously reabsorbed. In any case, surgery was postponed.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11278635/
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The surgeon said the synovial cyst might recur so the surgeon was still recommending surgery to stabilize my lumbar spine. I advocated for myself and refused surgery because the pain was gone. The agreement I made with the spine surgeon was that I would call when I was ready for surgery. That agreement was made almost 4 years ago and I'm still not ready. I'm more inclined to stay on the Actemra infusions because it seems to have some additional benefits besides treating PMR.