I have been on Nexletol for 3 years…no side effects experienced at all. It is very expensive…and works fine. I am not getting the super effects on LDL with Repatha and Nexletol like others mentioned above but better than before. The cardiologists say it is genetics…but not sure which gene they are talking about. My Lp(a) is in the 99th percentile, and I do not have FH. Diet, weight and exercise are all good…so it is genetics.
Janell, Volunteer Mentor | @jlharsh | Mar 16 9:56am
Well, @llynch I am in your court. I actually tried Repatha two times, even one injection of the other PCSK9, Praluent. From there, I guess hindsight would say all attempts were like the square peg, round hole analogy. I kept getting run in circles by my doctors. What do you want to do? Noone listened to me and I was not treated well by my providers. All the while like you, my quality of life tanked and I have had times that death sounded better. I am so glad that most people do not have these problems, and I do hope people like @con123 stay cautiously optimistic. Odds are, it’ll work for them! For me, I kept trying to get someone to listen to me. I do have a care team now that has walked me through figuring out how to treat my cholesterol. Are you referring to bempedoic acid? It is the most recent I have added, and with success! After decades of way too high numbers I finally am feeling better about that soft plaque running through my body. We are finding a treatment combo that is bringing my numbers to a good place.
It does sound to work for a lot of people, definitely worth trying. I got this pain in my right side, eventually startled awake thinking, “I forgot to breathe” (which of course doesn’t happen). Then, must have been something esophageal because I remember hunting for something real peppermint for relief. I’m probably weird 🙂
I would wake up thinking i had choked on a piece of candy. Would scare me to death. I was diagnosed with sleep apnea. They were right it's gone now with a sleep machine 😴 good luck 🙂
I love this medication. It lowered my LDL down to 14! The day after I inject I am a little bit tired, if I ever get a low back ache once in a while I just take a dons pill and it is gone in 20 minutes it has been a wonderful medication for me. A little nose, drip, and some sinus congestion and that’s it.
Yes, that can be a side effect and it happens to me occasionally. I do take one Doan’s pills and it disappears in 20 minutes! Compared to the pain I was Experiencing with statins It is so minor and fleeting
Interesting question! I never considered that my recent backache could be from Repatha, but sure enough it listed as a common side effect. I take an extra tylenol and do some stretching because it is the only thing I can tolerate that lowers my LDL.
Hello @donlynn, how are you currently doing? Are you experiencing side effects and having to stop Repatha? Have any alternatives been discussed with your provider as a result?
I have taken 16 Repatha shots so far. Each shot had different side-effects, but the recent shots have caused worse and worse liver pain. I call it liver pain, because it is located on my back, right side, above the waist. It’s in the location where I would imagine liver pain is located. At first I didn’t consider Repatha as the cause of my frequent light-headedness and faiting, because those began before I started Repatha, but those symptoms worsened a lot after I started Reptha and they are different now, Muscle pain is not frequent, but so bad I scream when it comes. Again I did not at first connect the pain to Repatha, but when I think about it, Repatha could be rhe cause or a factor making the pain much worse. This pain is new with starting Repatha, but does not happen often. It is hard for me to tell what is from the shots and what from something else, except the liver pain. 1000% sure that my liver pain is caused by Repatha shot.
I have taken 16 Repatha shots so far. Each shot had different side-effects, but the recent shots have caused worse and worse liver pain. I call it liver pain, because it is located on my back, right side, above the waist. It’s in the location where I would imagine liver pain is located. At first I didn’t consider Repatha as the cause of my frequent light-headedness and faiting, because those began before I started Repatha, but those symptoms worsened a lot after I started Reptha and they are different now, Muscle pain is not frequent, but so bad I scream when it comes. Again I did not at first connect the pain to Repatha, but when I think about it, Repatha could be rhe cause or a factor making the pain much worse. This pain is new with starting Repatha, but does not happen often. It is hard for me to tell what is from the shots and what from something else, except the liver pain. 1000% sure that my liver pain is caused by Repatha shot.
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I have been on Nexletol for 3 years…no side effects experienced at all. It is very expensive…and works fine. I am not getting the super effects on LDL with Repatha and Nexletol like others mentioned above but better than before. The cardiologists say it is genetics…but not sure which gene they are talking about. My Lp(a) is in the 99th percentile, and I do not have FH. Diet, weight and exercise are all good…so it is genetics.
Life is good,
Vania
Well, @llynch I am in your court. I actually tried Repatha two times, even one injection of the other PCSK9, Praluent. From there, I guess hindsight would say all attempts were like the square peg, round hole analogy. I kept getting run in circles by my doctors. What do you want to do? Noone listened to me and I was not treated well by my providers. All the while like you, my quality of life tanked and I have had times that death sounded better. I am so glad that most people do not have these problems, and I do hope people like @con123 stay cautiously optimistic. Odds are, it’ll work for them! For me, I kept trying to get someone to listen to me. I do have a care team now that has walked me through figuring out how to treat my cholesterol. Are you referring to bempedoic acid? It is the most recent I have added, and with success! After decades of way too high numbers I finally am feeling better about that soft plaque running through my body. We are finding a treatment combo that is bringing my numbers to a good place.
I would wake up thinking i had choked on a piece of candy. Would scare me to death. I was diagnosed with sleep apnea. They were right it's gone now with a sleep machine 😴 good luck 🙂
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1 ReactionLately, I've had some lower back pain that is rare for me. Is that considered a side effect of Repatha?? Curious.
Yes, that can be a side effect and it happens to me occasionally. I do take one Doan’s pills and it disappears in 20 minutes! Compared to the pain I was Experiencing with statins It is so minor and fleeting
Likewise, it's been great for me. No side effects that I can tell.
Interesting question! I never considered that my recent backache could be from Repatha, but sure enough it listed as a common side effect. I take an extra tylenol and do some stretching because it is the only thing I can tolerate that lowers my LDL.
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2 ReactionsHello @donlynn, how are you currently doing? Are you experiencing side effects and having to stop Repatha? Have any alternatives been discussed with your provider as a result?
I have taken 16 Repatha shots so far. Each shot had different side-effects, but the recent shots have caused worse and worse liver pain. I call it liver pain, because it is located on my back, right side, above the waist. It’s in the location where I would imagine liver pain is located. At first I didn’t consider Repatha as the cause of my frequent light-headedness and faiting, because those began before I started Repatha, but those symptoms worsened a lot after I started Reptha and they are different now, Muscle pain is not frequent, but so bad I scream when it comes. Again I did not at first connect the pain to Repatha, but when I think about it, Repatha could be rhe cause or a factor making the pain much worse. This pain is new with starting Repatha, but does not happen often. It is hard for me to tell what is from the shots and what from something else, except the liver pain. 1000% sure that my liver pain is caused by Repatha shot.
The liver itself, interestingly enough, does not have pain receptors, but the areas around the liver can be affected by liver problems.
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