Anyone with APS and having strokes received perispinal etanercept?

Posted by wittycjt @wittycjt, Jan 1, 2019

I want to try this but i am concerned my residuals could get worse. I am looking for some support or at least some feedback from those who have any experiences with this, please help, thanks,Cindy

Hi Cindy @wittycjt, I don't have any experience with APS but found some information that may help.

Perispinal Etanercept for Post-Stroke Neurological and Cognitive Dysfunction: Scientific Rationale and Current Evidence (2014)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110406/

AAN Issues Practice Advisory for Etanercept in Post-Stroke Disability (2016)
https://www.neurologyadvisor.com/stroke/aan-issues-practice-advisory-for-use-of-etanercept-in-adults-with-post-stroke-disability/article/501842/

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@johnbishop

Hi Cindy @wittycjt, I don't have any experience with APS but found some information that may help.

Perispinal Etanercept for Post-Stroke Neurological and Cognitive Dysfunction: Scientific Rationale and Current Evidence (2014)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110406/

AAN Issues Practice Advisory for Etanercept in Post-Stroke Disability (2016)
https://www.neurologyadvisor.com/stroke/aan-issues-practice-advisory-for-use-of-etanercept-in-adults-with-post-stroke-disability/article/501842/

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I appreciate your reply but because APS influences many meds i wanted to know specifically if anyone with APS had done this, i am aware of this information and i thank you, Cindy

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Well i had it-on Jan 23….it works, i would recomend to anyone wanting it to try it…go for it. I was very nervous when traveling to get it that i actually had a panic attack….seen in ER, eval and dischgd. Many good things came of the injection… the best response was the decrease in stroke caused “head fog”which came about, which gave me an increase in my overall happiness, returned hearing to left ear- felt a pop like when getting off a plane then my ear sounds opened up… i didnt even know i had a deficit in this ear until this happened. Walking is smoother. Can shower more steadily due to better balance. Cindy

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Hi @wittycjt thank you for sharing your story. You may have noticed I removed your email from your message so that you don't receive unwanted spam.

Glad to hear that you found success with the perispinal etanercept shot!

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@wittycjt

Well i had it-on Jan 23….it works, i would recomend to anyone wanting it to try it…go for it. I was very nervous when traveling to get it that i actually had a panic attack….seen in ER, eval and dischgd. Many good things came of the injection… the best response was the decrease in stroke caused “head fog”which came about, which gave me an increase in my overall happiness, returned hearing to left ear- felt a pop like when getting off a plane then my ear sounds opened up… i didnt even know i had a deficit in this ear until this happened. Walking is smoother. Can shower more steadily due to better balance. Cindy

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Just want to know if you stroke is a ischemic type and the clot was removed before you had you perispinal injection. My clot wasn't removed. I'm hoping that I would qualify.

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Hello @nilosalamat50 and welcome to Mayo Clinic Connect. I can see you are interested in feedback on clot removal prior to having a perispinal injection.

Members like @predictable and @rafeeq765 have shared about their experience with ischemic stroke, either their own or a family member's and may have additional information they can share with you regarding your question.

To clarify, for what are you hoping you would qualify? Have you consulted with a provider on this question yet?

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@amandajro

Hello @nilosalamat50 and welcome to Mayo Clinic Connect. I can see you are interested in feedback on clot removal prior to having a perispinal injection.

Members like @predictable and @rafeeq765 have shared about their experience with ischemic stroke, either their own or a family member's and may have additional information they can share with you regarding your question.

To clarify, for what are you hoping you would qualify? Have you consulted with a provider on this question yet?

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I'm sorry @nilosalamat50 that I can't be of much help with your malady, despite the confidence expressed by @amandajro. I have never faced APS or dealt with the medication etanercept. My clotting problem is derived from atrial fibrillation, and the medication for me is Coumadin, which is sensitive to variation in direct proportion to my Vitamin K intake. My "small stroke" (not a TIA) occurred in one of those variations five years ago, and with the help of my HMO's anticoagulation monitor I have had no further incidents. I hope one of our other Connect members can help you make a decision about your evolving therapy. Martin

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@wittycjt

Well i had it-on Jan 23….it works, i would recomend to anyone wanting it to try it…go for it. I was very nervous when traveling to get it that i actually had a panic attack….seen in ER, eval and dischgd. Many good things came of the injection… the best response was the decrease in stroke caused “head fog”which came about, which gave me an increase in my overall happiness, returned hearing to left ear- felt a pop like when getting off a plane then my ear sounds opened up… i didnt even know i had a deficit in this ear until this happened. Walking is smoother. Can shower more steadily due to better balance. Cindy

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Happy for you Cindy. Hope it works for me too. Looking forward for an update from you. They say that it keeps on improving overtime.

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