Started Repatha - Side Effects

Posted by HomeAgainLA @llynch17056, Mar 21, 2024

I had terrible side effects with statins (any statin, any dosage). For about 30 years my doctors have pushed statins and
I have resisted. Finally I agreed to Repatha. The first week I had zero side effects. With my second dose, 2 weeks in, i woke up and my joints and muscles hurt a LOT.
1. Does this side effect go away?
2. What do you know about the recent information that the Repatha trials underreporting deaths from cardiac events while taking Repatha.

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Just about six months ago, I quit taking Repatha because I could no longer use my shoulders. The doctors also shrugged me off. I quit taking statins prior to that because I felt like I had limes disease, more aches and groans. The Repatha though took all the muscle out of my shoulders, and I’m still dealing with this issue. I have no strength I have pain trying to maneuver And it doesn’t seem like anybody wants to do anything about it they’re clueless sell drugs and make us feel like a pile of really stinky stuff all for profit and why hear anything when I can sell you some more stuff and keep you coming back. Prior to this I was doing 50 push-ups every morning very active this drug poison me and no one wants to help out or take any responsibility. I’ve changed my diet. Lost some weight. Seems like I’m getting my cholesterol levels in good shape. I’ll know more in a couple weeks without using their money making chemicals.

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I truly understand. My internist believes me and works with me. Thank goodness. I no longer go to a cardiologist. I wish you luck. I hope you can get back to your usual self soon. It does take a long time to return to normal after statins and Repatha. Poison.

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Doctors only know what they are told. As I shared in some previous posts, my last injection (3rd) and last injection was on October 29th. Everyone's physiology is different. The Repatha brought my LDL to 37, total 104. So, what if you feel bad with mood swings, something I have never experienced.
I am now off of everything and feel 100% myself. I told my cardiologist you couldn't pay me enough to do a 4th injection. I don't believe any of these doctors understand the full scope of many of these medications. I find it extremely interesting that as my cholesterol falls then comes cognitive issues whether it was brain fog on the Lipitor or Crestor and then I develop mood swings on the Repatha. Its apparent to me regardless of what I am told, there is (for some people) a correlation here for what I experienced as the numbers fall. Certain side effects: Statistically insignificant when you read some of the trial notes. How convenient a term...

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Profile picture for HomeAgainLA @llynch17056

God bless you. It’s not your imagination. My cardiologist was amazingly unaware of the symptoms (just as you described them) caused to some by all the medications you mentioned, including Repatha. When I couldn’t get out of bed (and I am a very active person) I had to stop the Repatha. My cardiologist blew me off. Some people have no side effects, others, like you and I, have debilitating side effects. My cardiologist seemed to think I was either faking the side effects or exaggerating them. His attitude was to take these medications no matter how sick they made me. It took much longer for the Repatha symptoms to leave my body than it took the various statins. I ultimately decided that I would rather live a shorter life and be happy and active than to live bed bound by a drug. And, I was concerned about what I was putting my body through each time I tried another one. Right now I am on Terzepitide with no side effects. (It is not a statin). It has potential to lower LPL. I will test again in a couple of months (after 6 months on it). I am going to report back here. At this point in my life I am skeptical about the numbers obsession especially when the “cure” for high numbers are drugs that make me sick. I’m old enough to have witnessed drugs come and go, one day they are miracle makers and the next they will kill you (statins feel like killers). My internist told me to quit worrying about it. He said I’m active, eat healthy and I’m enjoying my life. He also points to my 3.5 ratio.

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@llynch17056
Whats the 3.5 ratio?

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Profile picture for HomeAgainLA @llynch17056

God bless you. It’s not your imagination. My cardiologist was amazingly unaware of the symptoms (just as you described them) caused to some by all the medications you mentioned, including Repatha. When I couldn’t get out of bed (and I am a very active person) I had to stop the Repatha. My cardiologist blew me off. Some people have no side effects, others, like you and I, have debilitating side effects. My cardiologist seemed to think I was either faking the side effects or exaggerating them. His attitude was to take these medications no matter how sick they made me. It took much longer for the Repatha symptoms to leave my body than it took the various statins. I ultimately decided that I would rather live a shorter life and be happy and active than to live bed bound by a drug. And, I was concerned about what I was putting my body through each time I tried another one. Right now I am on Terzepitide with no side effects. (It is not a statin). It has potential to lower LPL. I will test again in a couple of months (after 6 months on it). I am going to report back here. At this point in my life I am skeptical about the numbers obsession especially when the “cure” for high numbers are drugs that make me sick. I’m old enough to have witnessed drugs come and go, one day they are miracle makers and the next they will kill you (statins feel like killers). My internist told me to quit worrying about it. He said I’m active, eat healthy and I’m enjoying my life. He also points to my 3.5 ratio.

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@llynch17056
I, too, have a 3.6 ratio and knew I needed to stop after one injection (symptoms listed above). I decided to start pravastatin but at a 10 mg dose. I am in my early 80’s and found a NIH paper that indicated the “elderly” do well on a smaller dose. I will keep you all posted. The Repatha did get my LDL down into the mid 50’s but at the expense of making my lungs more vulnerable. The statin did not do that.

Shared files

The effectiveness and safety of low dose pravastatin in elderly hypertensive hypercholesterolemic subjects on antihypertensive therapy - PubMed (The-effectiveness-and-safety-of-low-dose-pravastatin-in-elderly-hypertensive-hypercholesterolemic-subjects-on-antihypertensive-therapy-PubMed.pdf)

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Profile picture for desertdwellerjh @desertdwellerjh

@llynch17056
I, too, have a 3.6 ratio and knew I needed to stop after one injection (symptoms listed above). I decided to start pravastatin but at a 10 mg dose. I am in my early 80’s and found a NIH paper that indicated the “elderly” do well on a smaller dose. I will keep you all posted. The Repatha did get my LDL down into the mid 50’s but at the expense of making my lungs more vulnerable. The statin did not do that.

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Profile picture for dee53 @dee53

@llynch17056
Whats the 3.5 ratio?

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@dee53 To calculate your cholesterol-to-HDL ratio, divide your total cholesterol by your HDL ("good") cholesterol. A ratio of less than 3.5:1 is considered optimal, while a ratio above 5:1 is considered high risk. A lower ratio indicates a lower risk of heart disease. How to calculate your cholesterol-to-HDL ratio Find your total cholesterol number: This is the sum of your LDL, HDL, and other cholesterol types.Find your HDL cholesterol number: This is your "good" cholesterol level.Divide your total cholesterol by your HDL cholesterol:Example: If your total cholesterol is 200 mg/dL and your HDL is 50 mg/dL, the ratio is 4 (\(200\div 50=4\)). Interpreting your ratio Below 3.5:1: Optimal, indicating a very low risk for heart disease.3.5:1 to 5:1: Normal, indicating a moderate risk.Above 5:1: High risk, indicating an increased likelihood of heart disease.

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Profile picture for johnjtgg @johnjtgg

Doctors only know what they are told. As I shared in some previous posts, my last injection (3rd) and last injection was on October 29th. Everyone's physiology is different. The Repatha brought my LDL to 37, total 104. So, what if you feel bad with mood swings, something I have never experienced.
I am now off of everything and feel 100% myself. I told my cardiologist you couldn't pay me enough to do a 4th injection. I don't believe any of these doctors understand the full scope of many of these medications. I find it extremely interesting that as my cholesterol falls then comes cognitive issues whether it was brain fog on the Lipitor or Crestor and then I develop mood swings on the Repatha. Its apparent to me regardless of what I am told, there is (for some people) a correlation here for what I experienced as the numbers fall. Certain side effects: Statistically insignificant when you read some of the trial notes. How convenient a term...

Jump to this post

@johnjtgg my side effects are so extreme that I wonder what these drugs might be doing to those that take them and have no symptoms so they just keep taking them. Do side effects mean it’s harmful to me but not harmful to those without side effects? I recently FINALLY got off of Effexor. My doctors said it wouldn’t harm me, but, now, 20 years later I am paying the price for taking it even though I didn’t have side effects. It’s the side effects that caused me to quit statins and Repatha.

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Profile picture for HomeAgainLA @llynch17056

@dee53 To calculate your cholesterol-to-HDL ratio, divide your total cholesterol by your HDL ("good") cholesterol. A ratio of less than 3.5:1 is considered optimal, while a ratio above 5:1 is considered high risk. A lower ratio indicates a lower risk of heart disease. How to calculate your cholesterol-to-HDL ratio Find your total cholesterol number: This is the sum of your LDL, HDL, and other cholesterol types.Find your HDL cholesterol number: This is your "good" cholesterol level.Divide your total cholesterol by your HDL cholesterol:Example: If your total cholesterol is 200 mg/dL and your HDL is 50 mg/dL, the ratio is 4 (\(200\div 50=4\)). Interpreting your ratio Below 3.5:1: Optimal, indicating a very low risk for heart disease.3.5:1 to 5:1: Normal, indicating a moderate risk.Above 5:1: High risk, indicating an increased likelihood of heart disease.

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@llynch17056
Here are a couple links you may be interested to read.
- American Heart Association “bad” cholesterol: An interesting comment here is “non-HDL levels might be a better marker for cardiovascular risk than LDL in patients with additional risk factors.” https://www.heart.org/en/news/2018/08/20/bad-cholesterol-can-be-deadly-in-otherwise-healthy-people
- Cholesterol Ratio or Non-HDL Cholesterol: https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/expert-answers/cholesterol-ratio/faq-20058006

My providers look at an even deeper dive past LDL and HDL. I do have quite a bit going and in the “additional risk” category. My numbers are good AND I am tolerating treatment.

Has your doctor mentioned looking at non-HDL cholesterol?

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Thank you. I read that. My ratio is good, but my non-HDL number is over 130. I’m around 165. But, there’s nothing I can do because I can’t take statins or Repatha. My weight, activity levels, food quality are all optimal. I am doing all the suggested life style changes. The only hope right now of lowering it is that I’m doing Terzepitide. I will redo labs after I’ve been on it for 6 months, that’s in 2 months. I have nothing else I can do except find peace of mind in my ratio number. 3.18.

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