Started Repatha - Side Effects

@loyd1957 Nexletol supposedly is for people that are statin and Repatha intolerant. So far I don’t have side effects 6 weeks in. I had terrible side effects on every other statin and on Repatha. I also started micro dosing Terzepitide for LPa and it did come down.

In my mind living life isn’t dependent on certain numbers. Also, they keep lowering the number they say you should have. I am skeptical about the whole numbers thing. Maybe some people really need lower numbers, who truly knows, but it is well documented that there are people that naturally have higher numbers and are healthy and stay healthy. My grandfather and my father died of heart attacks. My grandfather ate the food of the time ( full of pesticides), didn’t exercise and smoked. My father the same but he exercised and quit smoking after his first heart attack. My father took statins and died of a heart attack at 82.

My new cardiologist said that I should have lower numbers and that I have some plaque. But, for the first time, he admitted that I was healthy and not at risk of death from my heart any time soon. For 30 years my doctors implied I was at death’s door because I didn’t take statins. Like I told my daughter, at 78, if I died tomorrow no one will say “oh, she died young!” I am in a normal age range to die. If there are drugs that make me feel good and live longer, then, yay! Give them to me! But, if they make me sick and don’t cure me, then, no. I just want a happy healthy life which I hope is much longer, but longer is not better if you feel terrible.

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.

Your doctor didn’t read past the first listed common side effects. I would get another doctor, personal opinion. If that’s all he would give you.

Injection site reactions: Pain, bruising, swelling, or redness at the site of the shot.
Cold-like symptoms: Runny nose, sore throat, or sinus infections (nasopharyngitis).
Flu-like symptoms: Fever, cough, and fatigue.
Back pain.High blood sugar (hyperglycemia).
Urinary tract infections (UTIs)

Hi, @jopap and welcome to Mayo Clinic Connect. Flu, UTI and key infection sounds horrible. @llynch17056 listed common side effects that you will want to review.

From my own experience I key into your comments about having these symptoms progressively getting worse. I believe side effects snuck up on me. It does take about 3 months to get most of the drug out of your system, so if you discontinue side effects wouldn’t immediately go away. Definitely let your prescribing doctor know if you make changes.

Are you planning to discontinue, or take a break from Repatha?

@jopap I want to also mention that I am terribly statin intolerant and get very sick. Eventually Repatha made me very sick also. My cardiologist was about the same as yours. UGH! I got a new cardiologist that knows side effects and believes me. That was so nice. He suggested Nexletol which is for persons intolerant to statins and Repatha. I’m on week 10 with zero side effects. I well know side effects can show up, but so far this is the only thing that worked for me. Actually I’m feeling great.

After my 2nd injection I began to retain fluid in my hands and my feet were extremely swollen. I also got fever blisters inside of my mouth with flu like symptoms. The doctor suggested I stop and possibly try me on something different.

These drugs are very scary. My friend just became almost bedridden taking a statin. She had been taking it a while withouta problem but she was also taking another med for joint and muscle pain which hid the side effects of taking a statin. She got off of the meds that hid the side effects and the muscle and joint pain from the statin exploded. She went off the statin and the muscle and joint pain has gone away. She’s going to try Plant Sterols. I tried those and it didn’t lower my chlorestrol at all, but I understand that it works for some people. I just refuse to take a med that ruins my life and I also refuse to take meds to overcome the side effects of meds. That's a med slippery slope. So far, the Nexletol hasn’t had side effects. Fingers crossed.

@llynch17056 I also had issues with statins. The pain from them was so intense that I was literally bedridden. And since I'm clueless, I went from specialist to specialist trying to figure out what was causing it. Finally, a rheumatologist told me it was the statins and I stopped taking them. I couldn't even take the "natural" types of statins (homeopathic) the results were the same. I was put on Repatha and at first I was happy, because I had no symptoms. But by the end of month one, I was having severe cramps, muscle spasms, and gastric issues. I lost weight (I could stand to lose weight, but not that way!). I stopped Repatha on my own, because my doctor wanted me to stick with it (it was incredibly successful at lowering my cholesterol), but I felt it just wasn't worth the risk. I went without for a year. My cholesterol level climbed back up. I decided to give the Repatha another try. Again, no symptoms after the first dose, but the horrible symptoms slowly returned. It's been 4 months now and I'm going to have to quit again. In addition to the cramps, spasms, and gastric distress, now I also have extreme exhaustion. I can't tolerate how severely the Repatha is affecting my quality of life. I've had Preluent and Nexletol suggested, but Nexletol affects tendons and ligaments, and I have Ehlers Danlos Syndrome (EDS), so that's a no-go. I was told that Preluent is basically the same as Repatha only in smaller doses, so I'm going to give that a try. It occurred to me that maybe smaller doses of Repatha might be beneficial with lower chance of negative symptoms, but Repatha only comes in two doses, and the lowest one is what I've been on. If the food we eat doesn't kill us, the drugs will. *sigh*

@amirek11 we are just about clones. Our experiences were identical. I am almost 3 months in on Nexletol. The tendon rupture potential symptom scares me. I have already had my uric acid and liver function tested twice and it is normal. It says that those problems occur in the beginning months if at all. BUT, I understand if you have a condition that prevents use of Nexletol. So far I’m feeling fine, but I know it can go south any day. It’s such a trial. My BFF was having a LOT of muscle and nerve pain after she quit a med that had masked her muscle and nerve pain. She was going to go on nuronten (sp) but I told her to stop her statin before she did that. The pain went away when she quit the statin. Now she is on the journey to find something that lowers chlorestrol and doesn’t make her sick. It’s a jungle out there. And, I’m always fighting against the thought that the whole cholesterol thing is a scam anyway.