Repatha, side effects and what comes next?

Posted by donlynn @donlynn, Mar 14, 2025

Did anyone here have to stop Repatha injections due to side effects?

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Profile picture for Janell, Volunteer Mentor @jlharsh

@mlasky1120, welcome to Mayo Clinic Connect! You have found a good place to share experiences about living with heart health and high cholesterol.

I am tagging a few that may have information to share or know others that do: @gloaming, @ckscoville and @dlkreps

I am concerned that your doctor may not have shared the severity of your situation with you. Your mention of a 90% blockage in the widow-maker, your LDL of 188 and needing to take blood pressure medications do not sound like a good combination. You did not say how much calcium showed up on your scan but it does sound like it must have been concerning as well since it is what began your cascade of testing and eventually stents.

It sounds like you have a wise doctor wanting you to take several medications. I definitely agree with you that they can have side effects but unfortunately, there are times when their benefits are much stronger. I struggled with every cholesterol drug and never had mine under control. I finally found a doctor who was able to figure out how to treat my unique situation and get my numbers down to a reasonable level.

Here is an overview of cholesterol providing details of what levels are appropriate. You may find it helpful if you have not seen it.

- Mayo Clinic Cholesterol Overview
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/diagnosis-treatment/drc-20350806
I am curious if you are having symptoms. What prompted you initially to get a calcium scan? How much has drinking Earl Grey Tea lowered your LDL? I am full of questions…..has your doctor shared what your current risk level is?

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@jlharsh The 188 was the total cholesterol, I was stating my last two test results of total cholesterol, I haven't gone back to compare numbers but cholesterol was never 200 or under prior to drinking bergamot without a statin,
I had no symptoms at all, my Dr. ordered the Calcium Scan because of my statin intolerance.
No we have not discussed the risk level yet.

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I had been on Praluent but got severe muscle pain to the point I was using a walker and rollater. I have dc’d it c 3 weeks but hear it to get out of my system. My life has become SO negatively changed by the pain. Before taking this drug, I had heart bypass surgery and went through rehab feeling phenomenal!! I now cannot do cardio, walk or stand for any length of time. As a retired RN, and 8 year Cuddler in the NICU, I have been rolled out in a wheelchair the last time I was able to walk into the hospital to help these babies. All this to say, I pray for ways to get this out of my system and will never take another lipid lowering medication. Any suggestions are appreciated, thank you!😎❤️❤️

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I recommend two very excellent physicians on YouTube, and both deal extensively with their own personal hyperlipidemia. There isn't much one can do about extant calcification....that horse has left the barn. The only recourse is a bypass/stent. Even angioplasty is dangerous once it tries to move back/displace calcium plaque because the plaque can be dislodged and cause a stroke downstream from the heart and blockage location.

Those two physicians are: Dr. Gil Carvalho, MD, PhD, 'Nutrition Made Simple'. His latest video, as of today, speaks about lipid problems...if I have that correctly. The other is Dr. Nick Norwitz, MD, PhD (Harvard), a young sprite who has serious lipid problems, all genetic.

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Profile picture for Janell, Volunteer Mentor @jlharsh

@mlasky1120, welcome to Mayo Clinic Connect! You have found a good place to share experiences about living with heart health and high cholesterol.

I am tagging a few that may have information to share or know others that do: @gloaming, @ckscoville and @dlkreps

I am concerned that your doctor may not have shared the severity of your situation with you. Your mention of a 90% blockage in the widow-maker, your LDL of 188 and needing to take blood pressure medications do not sound like a good combination. You did not say how much calcium showed up on your scan but it does sound like it must have been concerning as well since it is what began your cascade of testing and eventually stents.

It sounds like you have a wise doctor wanting you to take several medications. I definitely agree with you that they can have side effects but unfortunately, there are times when their benefits are much stronger. I struggled with every cholesterol drug and never had mine under control. I finally found a doctor who was able to figure out how to treat my unique situation and get my numbers down to a reasonable level.

Here is an overview of cholesterol providing details of what levels are appropriate. You may find it helpful if you have not seen it.

- Mayo Clinic Cholesterol Overview
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/diagnosis-treatment/drc-20350806
I am curious if you are having symptoms. What prompted you initially to get a calcium scan? How much has drinking Earl Grey Tea lowered your LDL? I am full of questions…..has your doctor shared what your current risk level is?

Jump to this post

@jlharsh I forgot to mention I drink The Earl Grey tea from Bigelow - they use real bergamot not just flavored and their
Tea bags don't have any plastic - it is surprising how many do contain plastic, with boiling water not a healthy combo.
Hint: if the bags are heat sealed instead of folded and stapled they are plastic.

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Profile picture for lgreenrn @lgreenrn

I had been on Praluent but got severe muscle pain to the point I was using a walker and rollater. I have dc’d it c 3 weeks but hear it to get out of my system. My life has become SO negatively changed by the pain. Before taking this drug, I had heart bypass surgery and went through rehab feeling phenomenal!! I now cannot do cardio, walk or stand for any length of time. As a retired RN, and 8 year Cuddler in the NICU, I have been rolled out in a wheelchair the last time I was able to walk into the hospital to help these babies. All this to say, I pray for ways to get this out of my system and will never take another lipid lowering medication. Any suggestions are appreciated, thank you!😎❤️❤️

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@lgreenrn That was one of the meds my cardio doc wanted to take but my copay was like $350. and in the back of my mind why take the chance, so I told her I can't afford it.
I am glad I did not. Thank you for sharing.

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Profile picture for Janell, Volunteer Mentor @jlharsh

@mlasky1120, welcome to Mayo Clinic Connect! You have found a good place to share experiences about living with heart health and high cholesterol.

I am tagging a few that may have information to share or know others that do: @gloaming, @ckscoville and @dlkreps

I am concerned that your doctor may not have shared the severity of your situation with you. Your mention of a 90% blockage in the widow-maker, your LDL of 188 and needing to take blood pressure medications do not sound like a good combination. You did not say how much calcium showed up on your scan but it does sound like it must have been concerning as well since it is what began your cascade of testing and eventually stents.

It sounds like you have a wise doctor wanting you to take several medications. I definitely agree with you that they can have side effects but unfortunately, there are times when their benefits are much stronger. I struggled with every cholesterol drug and never had mine under control. I finally found a doctor who was able to figure out how to treat my unique situation and get my numbers down to a reasonable level.

Here is an overview of cholesterol providing details of what levels are appropriate. You may find it helpful if you have not seen it.

- Mayo Clinic Cholesterol Overview
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/diagnosis-treatment/drc-20350806
I am curious if you are having symptoms. What prompted you initially to get a calcium scan? How much has drinking Earl Grey Tea lowered your LDL? I am full of questions…..has your doctor shared what your current risk level is?

Jump to this post

@jlharsh , @mlasky1120: Although I had the same situation -- 90% blockage in my widow-maker , addressed with a stent -- I've never had a calcium scan, to my knowledge... although honestly I've had so many tests over the years that it could have slipped my mind. For what it's worth, my cholesterol has been under control for many years. The target for my LDL has been <70. Every now and then it creeps up to 100 but not that often. After my first stent in 2002, I went through an excellent 3-month cardiac rehab program at Vanderbilt Hospital in Tennessee, which included an educational component as well as exercise. That program changed my life and I learned what self-discipline could do to improve my own health, even though I've occasionally strayed from good habits.

It's now my wife whose cholesterol numbers have concerned her cardiologist, to the point where she has now begun Repatha injections. No apparent side-effects yet.

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Does anyone experience brain fog, feeling out of it since starting Repatha injections?

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I don't think I'm having brain fog but I am feeling like I am in a boat on the ocean moving up and down. Maybe someone would consider this brain fog? When I walk I cannot walk in a straight line. It says if my feet are following a curved line without my direction. Again this could be considered brain fog by someone? I look forward to your reply! And, God bless you.

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Profile picture for phobson @phobson

I don't think I'm having brain fog but I am feeling like I am in a boat on the ocean moving up and down. Maybe someone would consider this brain fog? When I walk I cannot walk in a straight line. It says if my feet are following a curved line without my direction. Again this could be considered brain fog by someone? I look forward to your reply! And, God bless you.

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@phobson Not brain fog per se, but your eye-brain-vestibular communications system is all mixed up. It could be meds, combo of meds, age-related deterioration, virus, ear canal damage undefined, tumor(s),.....This needs to be formally assessed by a competent authority. My opinion.

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There is a new cholesterol pill out now called Lipfendra. I forgot to ask my cardiologist when I seen him today about it; im on repatha and it works well with no side effects but thr pill requires no injection but may be more costly.

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