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.
@jlharsh I have had reactions to the statin and my doctor has talked to me about the acid, although the reductions are not as much as he wants with me having an LDL of 190. Can I ask? Have you had your cholesterol checked and do you know how much it came down with the new treatment for yourself?
@molliecarey1664 it went down from 85 or so to where it could not be read at all. My doc told to stops taking statins at the same time and then it went into the 20s which he said was good. I was taking only 5mg of Crestor at that time but stopped altogether.
@jlharsh I have had reactions to the statin and my doctor has talked to me about the acid, although the reductions are not as much as he wants with me having an LDL of 190. Can I ask? Have you had your cholesterol checked and do you know how much it came down with the new treatment for yourself?
@molliecarey1664
My LDL is under control for the first time in my life. I did take Bempedoic Acid (BA) for a time. I have since quit and haven’t checked my LDL since. What I remember is my LDL dropped to a number I was expecting so the BA must have been within the typical 20% range.
At my untreated highest, I believe my LDL was 100 points above yours. After all I’ve tried my current doctor even has me taking two medications I previously swore off. The answer has been finding a doctor that understands cholesterol and the drugs that affect it, not taking high doses of any one drug, and getting myself into a routine of excellent lifestyle helping my drugs work as good as possible. I currently take Leqvio (Inclisiran), ezetimibe and a statin.
I highly recommend listening to information related this exactly topic by Mayo Clinic Cardiology Continuing Medical Education. You can find the a link to the podcast in a comment I posted in another discussion, here:
- Connect Discussion “ How long do side effects from statins last once you stop taking them?” https://connect.mayoclinic.org/comment/1452797/
A direct link to the podcast is here:
- Mayo Clinic Podcast, Statin Myopathy (11 minutes) https://cardiovascularcmemayoclinic.podbean.com/e/statin-myopathy/
Each medication may be a bit different and I am not sure about BA specifically. I do know, for example that taking 1/2 ezetimibe typically drops LDL almost as much as taking an entire dose.
Has your doctor talked to you about trying cholesterol medications at doses less than what is typically recommended, or maybe considering not taking every day? Do you think you will try Bempedoic Acid? What is next?
@molliecarey1664
My LDL is under control for the first time in my life. I did take Bempedoic Acid (BA) for a time. I have since quit and haven’t checked my LDL since. What I remember is my LDL dropped to a number I was expecting so the BA must have been within the typical 20% range.
At my untreated highest, I believe my LDL was 100 points above yours. After all I’ve tried my current doctor even has me taking two medications I previously swore off. The answer has been finding a doctor that understands cholesterol and the drugs that affect it, not taking high doses of any one drug, and getting myself into a routine of excellent lifestyle helping my drugs work as good as possible. I currently take Leqvio (Inclisiran), ezetimibe and a statin.
I highly recommend listening to information related this exactly topic by Mayo Clinic Cardiology Continuing Medical Education. You can find the a link to the podcast in a comment I posted in another discussion, here:
- Connect Discussion “ How long do side effects from statins last once you stop taking them?” https://connect.mayoclinic.org/comment/1452797/
A direct link to the podcast is here:
- Mayo Clinic Podcast, Statin Myopathy (11 minutes) https://cardiovascularcmemayoclinic.podbean.com/e/statin-myopathy/
Each medication may be a bit different and I am not sure about BA specifically. I do know, for example that taking 1/2 ezetimibe typically drops LDL almost as much as taking an entire dose.
Has your doctor talked to you about trying cholesterol medications at doses less than what is typically recommended, or maybe considering not taking every day? Do you think you will try Bempedoic Acid? What is next?
@jlharsh yes when I took the statin it was every other day 1/2 dose to start and I could not tolerate. He just wants me on a med to reduce my LDL, he is open to having me start slow .He said Ezetimibe is ok but would not reduce my LDL to below 100 or 70 where I need to be. He said the Praulent is best and really reduces LDL. What are you taking, and if you ldl was 100 more than mine at 190, how did you get it low?
@molliecarey1664 it went down from 85 or so to where it could not be read at all. My doc told to stops taking statins at the same time and then it went into the 20s which he said was good. I was taking only 5mg of Crestor at that time but stopped altogether.
@jlharsh yes when I took the statin it was every other day 1/2 dose to start and I could not tolerate. He just wants me on a med to reduce my LDL, he is open to having me start slow .He said Ezetimibe is ok but would not reduce my LDL to below 100 or 70 where I need to be. He said the Praulent is best and really reduces LDL. What are you taking, and if you ldl was 100 more than mine at 190, how did you get it low?
@molliecarey1664
I went off every-other-week LDL apheresis treatments after trying Repatha and Praluent, a process that had dropped my baseline LDL some (70% LDL is removed from the blood every time, and all but a little bit would return by the time I went in for the next treatment).
Next, I switched doctors managing my cholesterol, and taking a heart healthy diet and being active were next. I had always heard lifestyle wouldn’t help genetically high cholesterol but now I understand they are super important.
I added 1/2 tablet ezetimibe, then 5mg rosuvastatin two times per week. Once working well I started Leqvio injections, discontinued apheresis. I have since made a statin switch to daily atorvastatin. I added Bempedoic Acid for a time but needed to discontinue.
I have learned all statins are not the same. The guest on the podcast I provided a link to, in my above comment is actually my prescribing doctor. Did he address anything that may be valuable to discuss with your cardiologist?
@molliecarey1664
I went off every-other-week LDL apheresis treatments after trying Repatha and Praluent, a process that had dropped my baseline LDL some (70% LDL is removed from the blood every time, and all but a little bit would return by the time I went in for the next treatment).
Next, I switched doctors managing my cholesterol, and taking a heart healthy diet and being active were next. I had always heard lifestyle wouldn’t help genetically high cholesterol but now I understand they are super important.
I added 1/2 tablet ezetimibe, then 5mg rosuvastatin two times per week. Once working well I started Leqvio injections, discontinued apheresis. I have since made a statin switch to daily atorvastatin. I added Bempedoic Acid for a time but needed to discontinue.
I have learned all statins are not the same. The guest on the podcast I provided a link to, in my above comment is actually my prescribing doctor. Did he address anything that may be valuable to discuss with your cardiologist?
@jlharsh so the praulent lowered your ldl by 70% ? did you have side effects and are you still taking? I know my doctor spoke to me about adding another drug. I workout 5 days a week and eat super healthy, tiny fat, no cholesterol, and fiber, but not moving my number.
@jlharsh so the praulent lowered your ldl by 70% ? did you have side effects and are you still taking? I know my doctor spoke to me about adding another drug. I workout 5 days a week and eat super healthy, tiny fat, no cholesterol, and fiber, but not moving my number.
@molliecarey1664 Oh, I am sorry for not being clear. I do specifically remember that Repatha lowered by LDL 15%. I briefly tried Praluent after I thought Repatha was causing problems. I experienced the same with Praluent and did not take it long enough to see how well it worked.
There is a different injection called Inclisiran (Leqvio) that is taken every 6 months. I am taking that now. I feel good taking this drug and it works better on my LDL. I can’t tell you a specific amount it lowers it since I take other things with it, but I am guessing somewhere around 50%.
@molliecarey1664 Oh, I am sorry for not being clear. I do specifically remember that Repatha lowered by LDL 15%. I briefly tried Praluent after I thought Repatha was causing problems. I experienced the same with Praluent and did not take it long enough to see how well it worked.
There is a different injection called Inclisiran (Leqvio) that is taken every 6 months. I am taking that now. I feel good taking this drug and it works better on my LDL. I can’t tell you a specific amount it lowers it since I take other things with it, but I am guessing somewhere around 50%.
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@jlharsh I have had reactions to the statin and my doctor has talked to me about the acid, although the reductions are not as much as he wants with me having an LDL of 190. Can I ask? Have you had your cholesterol checked and do you know how much it came down with the new treatment for yourself?
@writer418 can you share the percentage that your LDL came down with this treatment? Thank you.
@molliecarey1664 it went down from 85 or so to where it could not be read at all. My doc told to stops taking statins at the same time and then it went into the 20s which he said was good. I was taking only 5mg of Crestor at that time but stopped altogether.
@molliecarey1664
My LDL is under control for the first time in my life. I did take Bempedoic Acid (BA) for a time. I have since quit and haven’t checked my LDL since. What I remember is my LDL dropped to a number I was expecting so the BA must have been within the typical 20% range.
At my untreated highest, I believe my LDL was 100 points above yours. After all I’ve tried my current doctor even has me taking two medications I previously swore off. The answer has been finding a doctor that understands cholesterol and the drugs that affect it, not taking high doses of any one drug, and getting myself into a routine of excellent lifestyle helping my drugs work as good as possible. I currently take Leqvio (Inclisiran), ezetimibe and a statin.
I highly recommend listening to information related this exactly topic by Mayo Clinic Cardiology Continuing Medical Education. You can find the a link to the podcast in a comment I posted in another discussion, here:
- Connect Discussion “ How long do side effects from statins last once you stop taking them?”
https://connect.mayoclinic.org/comment/1452797/
A direct link to the podcast is here:
- Mayo Clinic Podcast, Statin Myopathy (11 minutes)
https://cardiovascularcmemayoclinic.podbean.com/e/statin-myopathy/
Each medication may be a bit different and I am not sure about BA specifically. I do know, for example that taking 1/2 ezetimibe typically drops LDL almost as much as taking an entire dose.
Has your doctor talked to you about trying cholesterol medications at doses less than what is typically recommended, or maybe considering not taking every day? Do you think you will try Bempedoic Acid? What is next?
@jlharsh yes when I took the statin it was every other day 1/2 dose to start and I could not tolerate. He just wants me on a med to reduce my LDL, he is open to having me start slow .He said Ezetimibe is ok but would not reduce my LDL to below 100 or 70 where I need to be. He said the Praulent is best and really reduces LDL. What are you taking, and if you ldl was 100 more than mine at 190, how did you get it low?
@writer418 sorry I am confused my LDL is familial and very high at 190, but why did you need a med if your was only 85, that is normal.
@molliecarey1664
I went off every-other-week LDL apheresis treatments after trying Repatha and Praluent, a process that had dropped my baseline LDL some (70% LDL is removed from the blood every time, and all but a little bit would return by the time I went in for the next treatment).
Next, I switched doctors managing my cholesterol, and taking a heart healthy diet and being active were next. I had always heard lifestyle wouldn’t help genetically high cholesterol but now I understand they are super important.
I added 1/2 tablet ezetimibe, then 5mg rosuvastatin two times per week. Once working well I started Leqvio injections, discontinued apheresis. I have since made a statin switch to daily atorvastatin. I added Bempedoic Acid for a time but needed to discontinue.
I have learned all statins are not the same. The guest on the podcast I provided a link to, in my above comment is actually my prescribing doctor. Did he address anything that may be valuable to discuss with your cardiologist?
@jlharsh so the praulent lowered your ldl by 70% ? did you have side effects and are you still taking? I know my doctor spoke to me about adding another drug. I workout 5 days a week and eat super healthy, tiny fat, no cholesterol, and fiber, but not moving my number.
@molliecarey1664 Oh, I am sorry for not being clear. I do specifically remember that Repatha lowered by LDL 15%. I briefly tried Praluent after I thought Repatha was causing problems. I experienced the same with Praluent and did not take it long enough to see how well it worked.
There is a different injection called Inclisiran (Leqvio) that is taken every 6 months. I am taking that now. I feel good taking this drug and it works better on my LDL. I can’t tell you a specific amount it lowers it since I take other things with it, but I am guessing somewhere around 50%.
Does this help?
@jlharsh yes, thank you, have you had any side effects with this new injection every six months?
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