@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/
@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.
@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!
I see my cardiologist tomorrow morning. I will tell him first thing, if a loved one asks him about Evolocumab/Repatha, be certain to mention the multiple side effects that seemingly are UNDER reported...
Yes i just stopped. After the first injection, I started getting very dizzy after the second injection I started getting muscle aches and being very tired after the third shot I ended up having a fib and vomiting. This is a new drug. I can’t take statins because of similar reactions. I am in good health other than having high cholesterol and calcification in my arteries in which I just had three stents put in three months ago. I meet with my doctor in two months. We’ll see what the next steps will be. I will say this my cholesterol went from 288 to 199 after four shots
I discontinued Repatha (MD in agreement) after experiencing significant upper and lower GI issues, that have not resolved for months after stopping Repatha. Took two medications to counter the side effects of Repatha, including a bile sequestrant. However, Repatha did significantly lower my numbers. On three cholesterol lowering medications, seeing some decent results.
I was on Repatha for about 3.5 years with almost no problem except for some mild gastro issues in the beginning which resolved. It lowered my lipid numbers dramatically but my coronary calcium score climbed significantly. However at the 3.5 year mark I contracted bacterial pneumonia which was successfully treated. The problem was that it came back..repeatedly! In fact over the next 1.5 years I had five recurrences. It was only at round 4 that it occurred to me that the Repatha could be the source of the problem so I stopped it in mid-july of this year. I seem to be finally recovering.
Repatha also seems to have increased my blood pressure which has always been historically low with me. Thankfully that is also resolving and my numbers have gone back to normal. All in all a disappointing drug for me especially since my plaque score kept increasing even though my ldl got to 70 or below.
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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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1 ReactionI cannot tolerate statins & have been on Repatha for 3 months. No problems so far.
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2 Reactions@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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5 Reactions@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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2 Reactions@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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1 ReactionI see my cardiologist tomorrow morning. I will tell him first thing, if a loved one asks him about Evolocumab/Repatha, be certain to mention the multiple side effects that seemingly are UNDER reported...
Next might be enlicitude. https://www.smithsonianmag.com/smart-news/new-daily-pill-could-potentially-be-lifesaving-americans-high-chloresterol-levels-researchers-say-180987668/
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1 ReactionYes i just stopped. After the first injection, I started getting very dizzy after the second injection I started getting muscle aches and being very tired after the third shot I ended up having a fib and vomiting. This is a new drug. I can’t take statins because of similar reactions. I am in good health other than having high cholesterol and calcification in my arteries in which I just had three stents put in three months ago. I meet with my doctor in two months. We’ll see what the next steps will be. I will say this my cholesterol went from 288 to 199 after four shots
I discontinued Repatha (MD in agreement) after experiencing significant upper and lower GI issues, that have not resolved for months after stopping Repatha. Took two medications to counter the side effects of Repatha, including a bile sequestrant. However, Repatha did significantly lower my numbers. On three cholesterol lowering medications, seeing some decent results.
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2 ReactionsI was on Repatha for about 3.5 years with almost no problem except for some mild gastro issues in the beginning which resolved. It lowered my lipid numbers dramatically but my coronary calcium score climbed significantly. However at the 3.5 year mark I contracted bacterial pneumonia which was successfully treated. The problem was that it came back..repeatedly! In fact over the next 1.5 years I had five recurrences. It was only at round 4 that it occurred to me that the Repatha could be the source of the problem so I stopped it in mid-july of this year. I seem to be finally recovering.
Repatha also seems to have increased my blood pressure which has always been historically low with me. Thankfully that is also resolving and my numbers have gone back to normal. All in all a disappointing drug for me especially since my plaque score kept increasing even though my ldl got to 70 or below.
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2 Reactions