Repatha as a treatment for high HDL Cholesterol

Posted by sue225 @sue225, May 7, 2019

Think I have posted this before but no feedback as of yet. Very interested in hearing from people who are on Repatha (evoculomab) to treat their high LDL levels. I am one of those patients.

@robschweiger

You are fortunate to be among those that can get the benefit of repatha without needing to take the statins. In my case, after completely going off statins as instructed by my cardiologist, I actually ended up with higher numbers than I did before. I then went back to 40mg Crestor and now trying to titrate to 10mg. My LDL dropped as low as 12.

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My LDL dropped over 50% after 6 months on Repatha.

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I cannot take any statin because it has adverse reactions to another condition I have. I have not taken anything for 'high' cholesterol in several years. My total cholesterol stays about 230. I am 63 and have had no heart attacks, no strokes, etc. I did a great deal of research and learned that our body makes its own cholesterol because we need it, especially our brains. Yes, statins reduce cholesterol levels but it doesn't distinguish between what is needed and what isn't. Personally, I think the premise that everyone needs to be below 100 (it used to be 200) assumes that we are all exactly alike when we are individuals with different needs. Every year at my annual physical my PCP uses a mathematical equation which determines my likelihood of having a heart attack. Every year my chances are 3% over the next 10 years that I will have a heart attack. We no longer discuss lowering my cholesterol.

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@cindyt63

I cannot take any statin because it has adverse reactions to another condition I have. I have not taken anything for 'high' cholesterol in several years. My total cholesterol stays about 230. I am 63 and have had no heart attacks, no strokes, etc. I did a great deal of research and learned that our body makes its own cholesterol because we need it, especially our brains. Yes, statins reduce cholesterol levels but it doesn't distinguish between what is needed and what isn't. Personally, I think the premise that everyone needs to be below 100 (it used to be 200) assumes that we are all exactly alike when we are individuals with different needs. Every year at my annual physical my PCP uses a mathematical equation which determines my likelihood of having a heart attack. Every year my chances are 3% over the next 10 years that I will have a heart attack. We no longer discuss lowering my cholesterol.

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I totally agree with you. I have high cholesterol, don’t tolerate statins or Repatha. I have had an artery dissection causing a heart attack but have never had a plaque blockage. Heart disease is very complex and some people really do need the statins for plaque. They supposedly help inflammation in blood vessels too. I have a 0 calcium score with high cholesterol. Heart disease in women can be very different and research is finally being done with female subjects. Most prior research was on male cardiac patients.

Liked by cindyt63

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@cindyt63

I cannot take any statin because it has adverse reactions to another condition I have. I have not taken anything for 'high' cholesterol in several years. My total cholesterol stays about 230. I am 63 and have had no heart attacks, no strokes, etc. I did a great deal of research and learned that our body makes its own cholesterol because we need it, especially our brains. Yes, statins reduce cholesterol levels but it doesn't distinguish between what is needed and what isn't. Personally, I think the premise that everyone needs to be below 100 (it used to be 200) assumes that we are all exactly alike when we are individuals with different needs. Every year at my annual physical my PCP uses a mathematical equation which determines my likelihood of having a heart attack. Every year my chances are 3% over the next 10 years that I will have a heart attack. We no longer discuss lowering my cholesterol.

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That makes a lot of sense. It reinforces a concern I have that my LDL is TOO low and that’s why I’m trying different strength of Crestor to get the right balance.

Liked by cindyt63

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It really does not treat HDL. It is fantastic for lowering overall Cholesterol and most particularly for LDL. With that said, however, I have noticed that when my overall Cholesterol improved, there was an improvement with the HDL as well. However, I think this is simply a secondary byproduct of the drug. What Repatha really is meant to do is drive down that bad cholesterol.

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@bigchevy

54 years old have been on statins for 20 plus years 80 mg Lipitor. Cholesterol ran between 180 and 230 started at about 320. Had a Calcium scan in Jan was 1200. No symptoms no previous problems no issues with statins. Family history piss poor. Dr started paper work for Repatha insurance accepeted been on Repatha for 2 months so far no side effects. Jan 28 Cholesterol 224 June 7- 84. HDL Jan -192 June – 54. Dr is impressed so far Im waiting for issues to crop up….seems to good to be true.

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UPDATE: May 2020. I have been on Repatha for about 1 year now still no side effects that I am aware of. Cholesterol 69 HDL 29 LDL16. I am still on a 80mg of Lipitor .

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I am on my second year of Repatha. It is a fantastic drug and game changer. Amazing how it drops LDL and absolutely no side effects. I give myself shots in alternating thighs and there is virtually no discomfort at all.

Liked by sue225

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Are you not concerned about your cholesterol levels getting too low? Our bodies need cholesterol for brain functions and other things. When too much is removed it is taking away what our bodies produce for proper functions.

Liked by lioness

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@bigchevy

UPDATE: May 2020. I have been on Repatha for about 1 year now still no side effects that I am aware of. Cholesterol 69 HDL 29 LDL16. I am still on a 80mg of Lipitor .

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@bigchevy My question to you is why then are you still on Lipitor?

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@lioness

@bigchevy My question to you is why then are you still on Lipitor?

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Cardiologist has chosen to keep me on the 80mg of Lipitor because of family history and lack of any problems on this high dose. I have tried to get him to lower to 40mg and monitor results but he does not want to.

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@robschweiger

I am on my second year of Repatha. It is a fantastic drug and game changer. Amazing how it drops LDL and absolutely no side effects. I give myself shots in alternating thighs and there is virtually no discomfort at all.

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I should add that I have a disagreement with Amgen re recommended LDL levels. Amgen has advised "the lower the better when I met with them in Thousand Oaks, CA." Yet, I maintain (as do cardiologists I consult with) that single digit LDLs are TOO low. Consequently, while still taking my repatha shots every 2 weeks, I have been able to lower my statin to only 5mg (while also using 1000g niacin noflush and 300mg fish oil/omega3. I've gone from single digit LDL to a healthier 45. Repatha IS a wonderful treatment for lowering cholesterol and esp. LDL. Just don't go too low!

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