I’ve had horrible reactions to statins and ezetimibe as well. Not fun, huh!?! I said I would never take ezetimibe again, and as strange as it sounds my LDL was not ever lower than when I took a very infrequent low dosage of one particular statin. More wasn’t better. I was off of all medications for a time and now trying again with some success. I’m curious, what type of impact does Leqvio have on your LDL? What are your great results? And do you test anything else that may help provide insight into why you react the way you do? Million dollar question, right?
My LDL went down 100 points! My HDL improved up 20 points! My total cholesterol came down 60 points. Dont have any other tests that would be of consequence in a cholesterol discussion. But you have to practice healthy diet, not all medicines are magic
My LDL went down 100 points! My HDL improved up 20 points! My total cholesterol came down 60 points. Dont have any other tests that would be of consequence in a cholesterol discussion. But you have to practice healthy diet, not all medicines are magic
That is super awesome! I agree, diet has helped me, and unlike drugs I can’t think of a down side of healthy eating. Medications are more about finding a net positive effect.
LEQVIO story
I would like to know if others had the same experience that I did.
I began with the LEQVIO shots on April 2024. I experienced much of the same side effects that most people describe in the blogs that I have read. The side effects were supposed to last 5 to 7 days. They lasted a few weeks for me but I tried to tough it out because it was working on lowering my cholesterol.
I did the first shot, after the second shot the side effects were a bit worse but I hung in there. The third shot was the worse….but about four weeks after the third shot I discovered that I was having a very low heart rate, as low as 38.
My Fitbit keeps a permanent daily log and we were able to scroll back and find that these episodes began about 6 weeks after the first shot. It was maybe 2 days out of week approximately. After the second shot the frequency increased and by the third shot, which is when we discovered the problem, it is nearly every day.
I have never had any heart related issues until I began with the shots. We are able to scroll back on the Fitbit data months, even years with no issues.
I have been to the cardiologist and fitted with a monitor for two weeks. The problem did show up on the results. I’ve had an ECHO, which showed the heart is strong but I am experiencing an issue called Bigeminy and Trigeminy.
I stopped the shots, tried to discuss the matter with the Dr. office that arranged the shots but they refused to talk about it and proceeded to tell me as that is not a side affect of the shot and it was a coincidence on the timing of the shots and me coming down with the issue, and since I stopped the shots they refused to look at the printed data because “I am no longer their patient”.
I didn’t accuse, I merely thought the timing was worthy of reporting.
She didn’t.
She also, after telling me this wasn’t a side affect, in the same breath told me the shots are only three years old and all the data isn’t in yet.
I suppose it could have been a coincidence but the timing sure doesn’t look that way to me.
At any rate, has anyone else had this experience with the shots?
LEQVIO story
I would like to know if others had the same experience that I did.
I began with the LEQVIO shots on April 2024. I experienced much of the same side effects that most people describe in the blogs that I have read. The side effects were supposed to last 5 to 7 days. They lasted a few weeks for me but I tried to tough it out because it was working on lowering my cholesterol.
I did the first shot, after the second shot the side effects were a bit worse but I hung in there. The third shot was the worse….but about four weeks after the third shot I discovered that I was having a very low heart rate, as low as 38.
My Fitbit keeps a permanent daily log and we were able to scroll back and find that these episodes began about 6 weeks after the first shot. It was maybe 2 days out of week approximately. After the second shot the frequency increased and by the third shot, which is when we discovered the problem, it is nearly every day.
I have never had any heart related issues until I began with the shots. We are able to scroll back on the Fitbit data months, even years with no issues.
I have been to the cardiologist and fitted with a monitor for two weeks. The problem did show up on the results. I’ve had an ECHO, which showed the heart is strong but I am experiencing an issue called Bigeminy and Trigeminy.
I stopped the shots, tried to discuss the matter with the Dr. office that arranged the shots but they refused to talk about it and proceeded to tell me as that is not a side affect of the shot and it was a coincidence on the timing of the shots and me coming down with the issue, and since I stopped the shots they refused to look at the printed data because “I am no longer their patient”.
I didn’t accuse, I merely thought the timing was worthy of reporting.
She didn’t.
She also, after telling me this wasn’t a side affect, in the same breath told me the shots are only three years old and all the data isn’t in yet.
I suppose it could have been a coincidence but the timing sure doesn’t look that way to me.
At any rate, has anyone else had this experience with the shots?
The main ones …major joint pain, dizziness, nausea, chest irritation and my blood sugar and A1C rose significantly…..plus,asi reported earlier…my LDL went up 40points soon after the third shot.
The main ones …major joint pain, dizziness, nausea, chest irritation and my blood sugar and A1C rose significantly…..plus,asi reported earlier…my LDL went up 40points soon after the third shot.
@shelby29 I’m happy to provide any information I can. I am 59 years old, have genetically high cholesterol and can’t think of a therapy we haven’t tried, including LDL apheresis. After some time implementing the treatment my doctor outlined my LDL has never been better. I take rosuvastatin, ezetimibe and have had 3 Inclisiran injections… so far so good.
@jlharsh I just had my first Leqvio injection today, and I’m hopeful I will not have the side effects I had with Repatha and Praluent (injection site rash that got worse each time). But my question for you is about your experience with lipid apheresis. My LP(a) is through the roof, and I have a consultation scheduled regarding apheresis. What can you tell me about it? Thanks very much.
@jlharsh I just had my first Leqvio injection today, and I’m hopeful I will not have the side effects I had with Repatha and Praluent (injection site rash that got worse each time). But my question for you is about your experience with lipid apheresis. My LP(a) is through the roof, and I have a consultation scheduled regarding apheresis. What can you tell me about it? Thanks very much.
Hi @llgrnd, welcome to Mayo Clinic Connect! Congrats getting Inclisiran #1 today. I am hopeful for all good outcomes right along with ya.
I started apheresis in 2019 and believe I had 117 every-other-week treatments. I had an AV fistula created for better access to my veins pretty quickly after starting. I was told I would continue treatments “for life, or however long my body would tolerate the treatment”. Inclisiran is how I was able to discontinue apheresis and subsequently my AV fistula shut off.
I do not have elevated LP(a) but a significant amount of patients at my treatment center were there for that reason. Each treatment lowered my LDL 70% and then it would go back up over the next week or so. I learned a lot through the experience and am happy to share anything that will help you. Ask away!
What clinic would you go to? When is your consultation?
Hi @llgrnd, welcome to Mayo Clinic Connect! Congrats getting Inclisiran #1 today. I am hopeful for all good outcomes right along with ya.
I started apheresis in 2019 and believe I had 117 every-other-week treatments. I had an AV fistula created for better access to my veins pretty quickly after starting. I was told I would continue treatments “for life, or however long my body would tolerate the treatment”. Inclisiran is how I was able to discontinue apheresis and subsequently my AV fistula shut off.
I do not have elevated LP(a) but a significant amount of patients at my treatment center were there for that reason. Each treatment lowered my LDL 70% and then it would go back up over the next week or so. I learned a lot through the experience and am happy to share anything that will help you. Ask away!
What clinic would you go to? When is your consultation?
Thank you so much for getting back to me! I wasn't sure how this site works. Sounds like you've had quite the journey. I should have said I've been referred for a consult. It's with Dr. Moriarty at KU Med in Kansas City near where I live. I have not heard from them yet, but I'm hoping to soon.
Lipid apheresis sounds like such a drastic measure....so time-consuming and probably exhausting....not to mention the thought of a fistula or port sounds terrifying. I've been told Inclisiran will not lower my LP(a). Have you found that to be true? I thought I'd get a head start with at least lowering my LDL as much as possible until I have the consult and can wrap my head around apheresis.
I'm hopeful that the new drug studies come up with an easier fix for LP(a) soon!
Anyway, I have had no reaction at all to the Leqvio shot I had today. I'm glad to know you are there for a resource. As I have more questions, I will reach out!
Thanks again!
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My LDL went down 100 points! My HDL improved up 20 points! My total cholesterol came down 60 points. Dont have any other tests that would be of consequence in a cholesterol discussion. But you have to practice healthy diet, not all medicines are magic
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1 ReactionThat is super awesome! I agree, diet has helped me, and unlike drugs I can’t think of a down side of healthy eating. Medications are more about finding a net positive effect.
LEQVIO story
I would like to know if others had the same experience that I did.
I began with the LEQVIO shots on April 2024. I experienced much of the same side effects that most people describe in the blogs that I have read. The side effects were supposed to last 5 to 7 days. They lasted a few weeks for me but I tried to tough it out because it was working on lowering my cholesterol.
I did the first shot, after the second shot the side effects were a bit worse but I hung in there. The third shot was the worse….but about four weeks after the third shot I discovered that I was having a very low heart rate, as low as 38.
My Fitbit keeps a permanent daily log and we were able to scroll back and find that these episodes began about 6 weeks after the first shot. It was maybe 2 days out of week approximately. After the second shot the frequency increased and by the third shot, which is when we discovered the problem, it is nearly every day.
I have never had any heart related issues until I began with the shots. We are able to scroll back on the Fitbit data months, even years with no issues.
I have been to the cardiologist and fitted with a monitor for two weeks. The problem did show up on the results. I’ve had an ECHO, which showed the heart is strong but I am experiencing an issue called Bigeminy and Trigeminy.
I stopped the shots, tried to discuss the matter with the Dr. office that arranged the shots but they refused to talk about it and proceeded to tell me as that is not a side affect of the shot and it was a coincidence on the timing of the shots and me coming down with the issue, and since I stopped the shots they refused to look at the printed data because “I am no longer their patient”.
I didn’t accuse, I merely thought the timing was worthy of reporting.
She didn’t.
She also, after telling me this wasn’t a side affect, in the same breath told me the shots are only three years old and all the data isn’t in yet.
I suppose it could have been a coincidence but the timing sure doesn’t look that way to me.
At any rate, has anyone else had this experience with the shots?
Hubby's shot super reduced his LDL. No side affect that we see.
What are your side affects?
The main ones …major joint pain, dizziness, nausea, chest irritation and my blood sugar and A1C rose significantly…..plus,asi reported earlier…my LDL went up 40points soon after the third shot.
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1 ReactionSeems like the shot is not working for you. So sorry...hope your team has another plan!
Thanks
@jlharsh I just had my first Leqvio injection today, and I’m hopeful I will not have the side effects I had with Repatha and Praluent (injection site rash that got worse each time). But my question for you is about your experience with lipid apheresis. My LP(a) is through the roof, and I have a consultation scheduled regarding apheresis. What can you tell me about it? Thanks very much.
Hi @llgrnd, welcome to Mayo Clinic Connect! Congrats getting Inclisiran #1 today. I am hopeful for all good outcomes right along with ya.
I started apheresis in 2019 and believe I had 117 every-other-week treatments. I had an AV fistula created for better access to my veins pretty quickly after starting. I was told I would continue treatments “for life, or however long my body would tolerate the treatment”. Inclisiran is how I was able to discontinue apheresis and subsequently my AV fistula shut off.
I do not have elevated LP(a) but a significant amount of patients at my treatment center were there for that reason. Each treatment lowered my LDL 70% and then it would go back up over the next week or so. I learned a lot through the experience and am happy to share anything that will help you. Ask away!
What clinic would you go to? When is your consultation?
-
Like -
Helpful -
Hug
3 ReactionsThank you so much for getting back to me! I wasn't sure how this site works. Sounds like you've had quite the journey. I should have said I've been referred for a consult. It's with Dr. Moriarty at KU Med in Kansas City near where I live. I have not heard from them yet, but I'm hoping to soon.
Lipid apheresis sounds like such a drastic measure....so time-consuming and probably exhausting....not to mention the thought of a fistula or port sounds terrifying. I've been told Inclisiran will not lower my LP(a). Have you found that to be true? I thought I'd get a head start with at least lowering my LDL as much as possible until I have the consult and can wrap my head around apheresis.
I'm hopeful that the new drug studies come up with an easier fix for LP(a) soon!
Anyway, I have had no reaction at all to the Leqvio shot I had today. I'm glad to know you are there for a resource. As I have more questions, I will reach out!
Thanks again!
-
Like -
Helpful -
Hug
1 Reaction