Repatha, side effects and what comes next?

Posted by donlynn @donlynn, Mar 14 2:32pm

Did anyone here have to stop Repatha injections due to side effects?

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Profile picture for Janell, Volunteer Mentor @jlharsh

@gently
I have a high deductible insurance plan and depending on where I’m at with my out-of-pocket I may have to pay a chunk….at first. In my plan, what I pay for medications get combined with other costs (doctor, etc.) for one total. Then, the drug company has reimbursed me for what I paid. I also see on the drugs website information for Medicare patients as well as a statement, “ The LEQVIO list price for uninsured patients is $3,587.73 per dose.”
- Leqvio/Inclisiran website: https://www.leqvio.com/savings-and-support/savings

My experience has been absolutely nothing like taking Repatha. I felt Repatha build up in my body, slowly shot by shot. Once I quit it took some time to feel relief.

I had confirmed with my pharmacist that the actual Inclisiran drug stays in the body about 2 days. Like I mentioned to @lulad01, I did have some reaction. I don’t think having the shots close together made a difference though. Also, I was having problems before starting these new injections (Repatha?). What I experienced was what I had been experiencing, but more intense and for a super brief amount of time within that 2 day window. The good news is that my most recent injection actually flipped sides, so to speak. I noticed a marked improvement after getting it. https://connect.mayoclinic.org/comment/1434143/

What are you thinking?

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@jlharsh Thanks to all who responded to my inquiry re experiences using Repatha and alternatives…It really helps me understand my symptoms…

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I cannot tolerate statins & have been on Repatha for 3 months. No problems so far.

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Profile picture for carolman210 @carolman210

I cannot tolerate statins & have been on Repatha for 3 months. No problems so far.

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@carolman210

I hope you are very much unlike me.

Reading your positive report on Repatha actually sets off a fit of moral upset for me. I feel like I should warn you.

I know that humans vary one from another in multitudes of ways, and I hope sincerely that you are nothing like me.

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Profile picture for tatiana987 @tatiana987

@carolman210

I hope you are very much unlike me.

Reading your positive report on Repatha actually sets off a fit of moral upset for me. I feel like I should warn you.

I know that humans vary one from another in multitudes of ways, and I hope sincerely that you are nothing like me.

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@tatiana987 I’m glad you warn people because maybe down the line someone could experience something related to Repatha. Knowledge is good😊

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Profile picture for backhand @backhand

@martspir
I decided it is time for me to give back. I have found the information on the Repatha threads very helpful because as you say, there is not much out there. I recently ( a month ago) stopped Repatha due to pain in my hands which made it hard to hold things among other issues. I had been on Repatha for 10 months, and the hand pain started with the last 2 injections. Prior to that I had developed leg and back pain, and was going to PT which wasn't helping. I am a very active and athletic 70+ year old, normal weight, mostly vegan. I am also now realizing that I was depressed on the Repatha. So after being off for a month, the depression is gone, the hands are slowly becoming less painful and the back pain is slowly dissipating. I hope all the pain goes away, they say it takes 2 or 3 months to get out of one's system. Also, I am looking for an alternative, I have had body pain on several statins which led to the Repatha. I have a high Lipoprotein a level and LDL issues which are genetic.

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@backhand I found the Neurocognitive Events the most troubling. That doesn't mean other problems wouldn't manifest. I took the 3rd injection on October 29th, and that will be the last...Never in my life have I had mood swings or cognitive issues of any kind...I like how these trials conveniently include side effects "statistically not significant" They are significant when you are experiencing them!

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