I was prescribed Repatha after too much joint and muscle pain while using Rosuvastatin (Crestor). I had been on the drug for about 8 months when I had total knee replacement surgery last November (7 months ago). My rehab has been very difficult with so much stiffness and swelling in my surgical knee. I decided to come off Repatha a month ago to see if I could lessen some of the swelling and joint stiffness. Just this past week I’ve begun to notice big improvements with how my knee responds to exercise. It’s not nearly as stiff and the swelling I had been experiencing in my knee joint is much diminished. I’m done with cholesterol meds as they’ve made my active lifestyle very difficult since beginning down this road a few years ago. My cholesterol level without meds is around 208. At 68 y/o I’m more concerned with the quality of my remaining years than in trying to squeeze out another year or two of life. At least I can say I tried.
I was prescribed Repatha after too much joint and muscle pain while using Rosuvastatin (Crestor). I had been on the drug for about 8 months when I had total knee replacement surgery last November (7 months ago). My rehab has been very difficult with so much stiffness and swelling in my surgical knee. I decided to come off Repatha a month ago to see if I could lessen some of the swelling and joint stiffness. Just this past week I’ve begun to notice big improvements with how my knee responds to exercise. It’s not nearly as stiff and the swelling I had been experiencing in my knee joint is much diminished. I’m done with cholesterol meds as they’ve made my active lifestyle very difficult since beginning down this road a few years ago. My cholesterol level without meds is around 208. At 68 y/o I’m more concerned with the quality of my remaining years than in trying to squeeze out another year or two of life. At least I can say I tried.
Hi @onekgguy, and welcome to Mayo Clinic Connect! It sounds like your knee replacement has been more than a bump in the road. I am glad you have been able to identify a source of discomfort, then able to discontinue Repatha injections. Hopefully your recovery will be in full swing now.
I see @unimon responded to you recommending you check out inclisiran. I certainly understand your exhaustion simply trying to live your life. I am in that boat with you! I can say after trying Repatha I have successfully had five injections of inclisiran. Finding a doctor to walk me through the process of figuring out “me” has been key.
I am curious what your prescribing doctor recommends. Have they discussed your unique risk factors with you?
Would some scientists classify Repatha as gene therapy? What med might one logically compare it to besides Inclisarin, which does seem to be gene therapy? Monoclonal antibody vs. siRNA. Hmm. I don’t understand how an siRNA leaves the body if side effects are nasty.
Hi @onekgguy, and welcome to Mayo Clinic Connect! It sounds like your knee replacement has been more than a bump in the road. I am glad you have been able to identify a source of discomfort, then able to discontinue Repatha injections. Hopefully your recovery will be in full swing now.
I see @unimon responded to you recommending you check out inclisiran. I certainly understand your exhaustion simply trying to live your life. I am in that boat with you! I can say after trying Repatha I have successfully had five injections of inclisiran. Finding a doctor to walk me through the process of figuring out “me” has been key.
I am curious what your prescribing doctor recommends. Have they discussed your unique risk factors with you?
Thanks, Janell, for bringing up Inclisiran. My doctor prescribed it but Medicare would not pay until I had tried Repatha first. So essentially some Medicare bureaucrats prescribed Repatha for me, and my doc « agreed » to the Reptha or nothing decision. I read that Inclisiran has fewer side effects than Repatha. I guess the Medicare people read that too, but decided that people like me should undergo greater risk of side effects rather than lesser risk. Thanks a lot, Medicare. I wonder whether there are any lawsuits against the people who made this terrible decision. If a patient died of Repatha side effects, would that be maybe second degree murder? Practicing medicine without a license? Lawsuits and criminal charges?
I was prescribed Repatha after too much joint and muscle pain while using Rosuvastatin (Crestor). I had been on the drug for about 8 months when I had total knee replacement surgery last November (7 months ago). My rehab has been very difficult with so much stiffness and swelling in my surgical knee. I decided to come off Repatha a month ago to see if I could lessen some of the swelling and joint stiffness. Just this past week I’ve begun to notice big improvements with how my knee responds to exercise. It’s not nearly as stiff and the swelling I had been experiencing in my knee joint is much diminished. I’m done with cholesterol meds as they’ve made my active lifestyle very difficult since beginning down this road a few years ago. My cholesterol level without meds is around 208. At 68 y/o I’m more concerned with the quality of my remaining years than in trying to squeeze out another year or two of life. At least I can say I tried.
I totally agree with you ! I saw in this discussion group a Dr once said “what good is low cholesterol if you can’t get out of the bed in the morning”. That advise stuck with me !!
Thanks, Janell, for bringing up Inclisiran. My doctor prescribed it but Medicare would not pay until I had tried Repatha first. So essentially some Medicare bureaucrats prescribed Repatha for me, and my doc « agreed » to the Reptha or nothing decision. I read that Inclisiran has fewer side effects than Repatha. I guess the Medicare people read that too, but decided that people like me should undergo greater risk of side effects rather than lesser risk. Thanks a lot, Medicare. I wonder whether there are any lawsuits against the people who made this terrible decision. If a patient died of Repatha side effects, would that be maybe second degree murder? Practicing medicine without a license? Lawsuits and criminal charges?
I plan to ask my doctor to prescribe Leqvio (inclisiran) and was interested to see comments about Medicare lack of coverage. According to the CMS.gov website showing drug pricing, (https://www.cms.gov/medicare/payment/part-b-drugs/asp-pricing-files) Part B (not Part D drug plans) does cover Leqvio, although I'm not sure if Advantage Plans might not put restrictions (such as requiring Repatha step therapy). So it appears that Medicare itself is not obstruction. I guess I'll find out of Traditional Medicare also requires step therapy prior to covering inclisiran. I'm curious if others on Medicare who take inclisiran have other experiences with this drug.
I plan to ask my doctor to prescribe Leqvio (inclisiran) and was interested to see comments about Medicare lack of coverage. According to the CMS.gov website showing drug pricing, (https://www.cms.gov/medicare/payment/part-b-drugs/asp-pricing-files) Part B (not Part D drug plans) does cover Leqvio, although I'm not sure if Advantage Plans might not put restrictions (such as requiring Repatha step therapy). So it appears that Medicare itself is not obstruction. I guess I'll find out of Traditional Medicare also requires step therapy prior to covering inclisiran. I'm curious if others on Medicare who take inclisiran have other experiences with this drug.
Hmmmm. I got the Inclisiran prescription in summer of 2024. I had Medicare parts A and B and a Supplemental and AARP Medicare for meds, not an advantage plan. What Renown Medical in Reno told me is that Medicare would not cover Inclisiran UNTIL AFTER I had first tried Repatha. Note that this was not recent and that Renown, not Medicare told me what Medicare would pay,
BTW imo a person would be wise to consider whether Inclisiran is gene therapy and whether they think it might be making any permament changes to the body. I can’t figure out either how it stays in the intended place in the body or how it leaves the body when the patient wants to stop. I wonder what Mr. Kennedy thinks of siRNAs?
Hmmmm. I got the Inclisiran prescription in summer of 2024. I had Medicare parts A and B and a Supplemental and AARP Medicare for meds, not an advantage plan. What Renown Medical in Reno told me is that Medicare would not cover Inclisiran UNTIL AFTER I had first tried Repatha. Note that this was not recent and that Renown, not Medicare told me what Medicare would pay,
BTW imo a person would be wise to consider whether Inclisiran is gene therapy and whether they think it might be making any permament changes to the body. I can’t figure out either how it stays in the intended place in the body or how it leaves the body when the patient wants to stop. I wonder what Mr. Kennedy thinks of siRNAs?
Thanks. Those studies of Inclisiran in the footnotes (footnote number 3 is what I refer to here) make me wish I were better educated to read scientific studies. I do note two potential problems in this study: 1. They only lasted 6 months, not long enough to determine whether there are long term problems imo. 2. Each dose cohort (group of people receiving the same experimental doses) was only 4 to 8 people. Really? So few guinea pigs? And conclusions can be drawn?
I appreciate efforts to try to answer concerns about this new technology but my questions/concerns remain firm. How does an siRNA remain in its intended location in the body and how does it leave the body when that is intended? I imagine a lot of unintended consequences and problems removing the product from the body, A little education is a dangerous thing, as somebody famous once said. I wish I had more.
I was prescribed Repatha after too much joint and muscle pain while using Rosuvastatin (Crestor). I had been on the drug for about 8 months when I had total knee replacement surgery last November (7 months ago). My rehab has been very difficult with so much stiffness and swelling in my surgical knee. I decided to come off Repatha a month ago to see if I could lessen some of the swelling and joint stiffness. Just this past week I’ve begun to notice big improvements with how my knee responds to exercise. It’s not nearly as stiff and the swelling I had been experiencing in my knee joint is much diminished. I’m done with cholesterol meds as they’ve made my active lifestyle very difficult since beginning down this road a few years ago. My cholesterol level without meds is around 208. At 68 y/o I’m more concerned with the quality of my remaining years than in trying to squeeze out another year or two of life. At least I can say I tried.
No side effect from Rapatha here. You might want to try inclisiran before giving up on lowering your LDL.
Hi @onekgguy, and welcome to Mayo Clinic Connect! It sounds like your knee replacement has been more than a bump in the road. I am glad you have been able to identify a source of discomfort, then able to discontinue Repatha injections. Hopefully your recovery will be in full swing now.
I see @unimon responded to you recommending you check out inclisiran. I certainly understand your exhaustion simply trying to live your life. I am in that boat with you! I can say after trying Repatha I have successfully had five injections of inclisiran. Finding a doctor to walk me through the process of figuring out “me” has been key.
I am curious what your prescribing doctor recommends. Have they discussed your unique risk factors with you?
Unimon, what do you know about inclisiran?
Would some scientists classify Repatha as gene therapy? What med might one logically compare it to besides Inclisarin, which does seem to be gene therapy? Monoclonal antibody vs. siRNA. Hmm. I don’t understand how an siRNA leaves the body if side effects are nasty.
Thanks, Janell, for bringing up Inclisiran. My doctor prescribed it but Medicare would not pay until I had tried Repatha first. So essentially some Medicare bureaucrats prescribed Repatha for me, and my doc « agreed » to the Reptha or nothing decision. I read that Inclisiran has fewer side effects than Repatha. I guess the Medicare people read that too, but decided that people like me should undergo greater risk of side effects rather than lesser risk. Thanks a lot, Medicare. I wonder whether there are any lawsuits against the people who made this terrible decision. If a patient died of Repatha side effects, would that be maybe second degree murder? Practicing medicine without a license? Lawsuits and criminal charges?
I totally agree with you ! I saw in this discussion group a Dr once said “what good is low cholesterol if you can’t get out of the bed in the morning”. That advise stuck with me !!
I plan to ask my doctor to prescribe Leqvio (inclisiran) and was interested to see comments about Medicare lack of coverage. According to the CMS.gov website showing drug pricing, (https://www.cms.gov/medicare/payment/part-b-drugs/asp-pricing-files) Part B (not Part D drug plans) does cover Leqvio, although I'm not sure if Advantage Plans might not put restrictions (such as requiring Repatha step therapy). So it appears that Medicare itself is not obstruction. I guess I'll find out of Traditional Medicare also requires step therapy prior to covering inclisiran. I'm curious if others on Medicare who take inclisiran have other experiences with this drug.
Hmmmm. I got the Inclisiran prescription in summer of 2024. I had Medicare parts A and B and a Supplemental and AARP Medicare for meds, not an advantage plan. What Renown Medical in Reno told me is that Medicare would not cover Inclisiran UNTIL AFTER I had first tried Repatha. Note that this was not recent and that Renown, not Medicare told me what Medicare would pay,
BTW imo a person would be wise to consider whether Inclisiran is gene therapy and whether they think it might be making any permament changes to the body. I can’t figure out either how it stays in the intended place in the body or how it leaves the body when the patient wants to stop. I wonder what Mr. Kennedy thinks of siRNAs?
@tatiana987 The drug company’s website has good information that may answer your questions about how inclisiran (Leqvio) works. https://www.leqviohcp.com/mechanism-of-action
Thanks. Those studies of Inclisiran in the footnotes (footnote number 3 is what I refer to here) make me wish I were better educated to read scientific studies. I do note two potential problems in this study: 1. They only lasted 6 months, not long enough to determine whether there are long term problems imo. 2. Each dose cohort (group of people receiving the same experimental doses) was only 4 to 8 people. Really? So few guinea pigs? And conclusions can be drawn?
I appreciate efforts to try to answer concerns about this new technology but my questions/concerns remain firm. How does an siRNA remain in its intended location in the body and how does it leave the body when that is intended? I imagine a lot of unintended consequences and problems removing the product from the body, A little education is a dangerous thing, as somebody famous once said. I wish I had more.