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.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

I took my first dose a week ago. Like you I cannot take any statins. My muscles hurt so bad in my arm it hurts to raise it. (Just hurts nothing more, like heart related), my leg muscles are hurting and feel weak also. I would also like to know if this is temporary and any cardiac side effects?

REPLY
Profile picture for lwilson0437 @lwilson0437

I took my first dose a week ago. Like you I cannot take any statins. My muscles hurt so bad in my arm it hurts to raise it. (Just hurts nothing more, like heart related), my leg muscles are hurting and feel weak also. I would also like to know if this is temporary and any cardiac side effects?

Jump to this post

@lwilson0437 I had to quit Repatha because of the side effects. I am now on Nexletol. I had minor side effects (didn’t prevent me from doing yoga and my normal activities) for about 3 months. Now I am free of side effects at 5 months. My cholesterol is down, not as dramatically as it was with statins and Repatha, but my doctor said he is satisfied and so am I. It was 200, but my ratio is 2.3 which is excellent. He and I both agree that a lower cholesterol has no value if i am in pain and bedridden.

REPLY
Profile picture for HomeAgainLA @llynch17056

@lwilson0437 I had to quit Repatha because of the side effects. I am now on Nexletol. I had minor side effects (didn’t prevent me from doing yoga and my normal activities) for about 3 months. Now I am free of side effects at 5 months. My cholesterol is down, not as dramatically as it was with statins and Repatha, but my doctor said he is satisfied and so am I. It was 200, but my ratio is 2.3 which is excellent. He and I both agree that a lower cholesterol has no value if i am in pain and bedridden.

Jump to this post

@llynch17056 perfect sense! If I can't exercise that isn't going to help either!

REPLY
Profile picture for lwilson0437 @lwilson0437

@llynch17056 perfect sense! If I can't exercise that isn't going to help either!

Jump to this post

@lwilson0437 completely agree.

REPLY
Profile picture for HomeAgainLA @llynch17056

CoQ10 gave me statin-like side effects and had no effect on lowering my cholesterol. I have such a strong reaction to statins, bedridden and progressively felt as though they would kill me, I’m not interested in taking them in hopes CoQ10 might relieve some of the side effects.

Since I posted I have been trying Nexletol. I had side effects as well, but not bedridden. Pain in my joints and tendons. But I wasn’t bedridden and still went to yoga. I am now 5 1/2 months into Nexletol and most side effects have gone away. I still believe it is harming me, but I will stay the course for now.

After being on it for four months my blood work had improved. My doctor is satisfied even though my cholesterol was 200, down from 248, , my ratio was 2.2, down from 3.18. My LPa was down slightly. I told him I was not willing to take more meds and that I was satisfied. He agreed. He said, “there’s no point in having lower cholesterol but you can’t get out of bed, and, with such a great ratio, I think you’re fine.”

Jump to this post

@llynch17056 OMG, I believe cholesterol in the 200's is great...My total is 298, however, my Ldl is 198.
The medical powers that be changed the number chart; in the 1960's the good number was 350 or below....not enough people were on statins, so they changed it to generate more $$$$$$. Primary Care doctors are pushing people below 200 to be on statins as well. God help us!

REPLY
Profile picture for jopap @jopap

I have been on Repatha for 6 months. It works to lower LDL- and since I cannot tolerate statins, I was celebrating. However, for a few days after each injection, I experience flu-like symptoms and back pain. I dealt with it until my last shot 3 weeks ago. Flu symptoms turned into a 103 fever, and a UTI turned into a raging kidney infection. Am I right to draw a connection to Repatha? My cardiologist said the only side effects would be soreness at the injection site... right! Would love to hear from other users.

Jump to this post

@jopap I had UTI's all of the time while on Repatha. It finally turned into very rare UTI's that could be deadly. I had them constantly while on the drug. In my case, it was from the Repatha. I have not had one in a year and 10 months since I went off the Repatha. When I read up on it, the data showed that UTI's were a symptom. I had way worse symptoms along with the UTI's, Look it up on the web and information will pop up about this.

REPLY
Profile picture for prunella1111 @prunella1111

@llynch17056 OMG, I believe cholesterol in the 200's is great...My total is 298, however, my Ldl is 198.
The medical powers that be changed the number chart; in the 1960's the good number was 350 or below....not enough people were on statins, so they changed it to generate more $$$$$$. Primary Care doctors are pushing people below 200 to be on statins as well. God help us!

Jump to this post

@prunella1111 You believe cholesterol in the 200's is great? Really? The lower the better, if you have have coronary artery disease you want your LDL under 50 for reversal. Studies have shown this. Under 50 is the standard for the European standards.

REPLY
Profile picture for rhondaj @rhondaj

@jopap I had UTI's all of the time while on Repatha. It finally turned into very rare UTI's that could be deadly. I had them constantly while on the drug. In my case, it was from the Repatha. I have not had one in a year and 10 months since I went off the Repatha. When I read up on it, the data showed that UTI's were a symptom. I had way worse symptoms along with the UTI's, Look it up on the web and information will pop up about this.

Jump to this post

@rhondaj I’m so sorry you experienced that. UTIs are awful. I sometimes think it’s all a big pharma/ cardiologist scam.

REPLY
Profile picture for prunella1111 @prunella1111

@llynch17056 OMG, I believe cholesterol in the 200's is great...My total is 298, however, my Ldl is 198.
The medical powers that be changed the number chart; in the 1960's the good number was 350 or below....not enough people were on statins, so they changed it to generate more $$$$$$. Primary Care doctors are pushing people below 200 to be on statins as well. God help us!

Jump to this post

@prunella1111 agree 100%.

REPLY
Profile picture for rochelle369 @rochelle369

@prunella1111 You believe cholesterol in the 200's is great? Really? The lower the better, if you have have coronary artery disease you want your LDL under 50 for reversal. Studies have shown this. Under 50 is the standard for the European standards.

Jump to this post

@rochelle369 I’m sticking with my doctor saying it’s good in light of my ratio AND that I am intolerant of these drugs. I get very ill and can’t get out of bed. I become an invalid. What good is that?

REPLY
Please sign in or register to post a reply.