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Any experiences with Kevzara (sarilumab)?
Polymyalgia Rheumatica (PMR) | Last Active: May 1 3:40pm | Replies (114)Comment receiving replies
I only know what happened when my Actemra injections were stopped during Covid when supplies were limited to seriously ill Covid patients. It took a few weeks for my symptoms to return. My symptoms returned gradually and eventually I needed to take Prednisone again. It was NOT like a sudden full-on relapse that could happen overnight when I was on prednisone for 12 years.
I was off Actemra for a total of 6 months and needed 15 mg of Prednisone again. What was impressive was what happened when Actemra injections were restarted. I was able to taper off prednisone again quickly. I went from 15 mg to zero again in about 3 weeks after the injections were restarted.
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Another time I was switched to a monthly Actemra infusion to facilitate the surgical fusion of my lumbar spine. The surgeon said I had to be off Actemra for one month before surgery and one month after surgery. I didn't think I could do that when I needed weekly Actemra injections. Since Actemra infusions were every 4 weeks I only had to be able to skip one infusion. I probably could have done that. My inflammation markers started to increase at 7 weeks after my last Actemra infusion but I didn't have any pain.
What was remarkable was that my need for a lumbar fusion was because a synovial cyst formed on my lumbar spine. While I was doing Actemra infusions the synovial cyst was reabsorbed and I no longer needed surgery. The surgeon said that sometimes happens. AI says the "spontaneous resorption" of a lumbar synovial cyst is rare.
"Spontaneous resolution of lumbar synovial cysts is considered an extremely rare event, with only a limited number of cases documented in medical literature. While most symptomatic cases require surgical excision, these cysts can occasionally disappear on their own, often linked to spontaneous rupture, decreased inflammation, or stabilization of the spine."
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My rheumatologist thought decreased inflammation while I was doing Actemra infusions was the most likely explanation. In any case, the synovial cyst hasn't recurred. My rheumatologist wanted me to stay on Actemra infusions. I was glad because I was getting tired of doing weekly injections.
Replies to "@jabrown0407 I only know what happened when my Actemra injections were stopped during Covid when supplies..."
@dadcue I was on Actemra infusions for 5 years. It was a game changer for me. I was able to work as a Physican Assistant in a fast paced urgent care doing 12+ hour shifts.
I got C-Diff and had a bowel rupture which caused a catastrophic illness. 4 month hospital stay. It was after all of this that I paid attention to one of the side effects of Actemra is bowel rupture which rare. I was not able to resume the Actemra due to that side effect. Hence the Kevzara. If I had to do all over again I’m not so sure I still wouldn’t have used Actemra because it improved my quality of life three fold.
Pray it continues to help you, Lord knows I miss it making me better for the five years it did.
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@dadcue As for rare, I have nothing less than a dozen rare medical conditions, including being allergic to all NSAIDs as well as being allergic to Tylenol. If I ever become allergic to wine it's all over.
What I realize is biologics are not as simple to calculate half lives, and any calculated value based on research is only an estimate, not a fact I would bet on. Half lives of antibiotics are easier to understand and calculate. Not sure what the difference is and really don't care. Looking for medical-life balance in my golden years and it's elusive. I did not retire to have medical problems consume my work hours.