Evolocumab and Weakness: What Users Say

• sat...
• July 4, 2021

For High Cholesterol "First, let me say that my cholesterol has been creeping up over the years to mid-200s, since I was pregnant in my 30s. I am now in my 70s. In the last 3 years, I tried to inject Repatha. In the first year, I injected five times in five months, and my cholesterol plummeted down to 160, but I felt weak. More recently, I had one injection in September and another in December. The injection in December turned me into a cripple. I went to see a few doctors who prescribed Prednisone to get me over the intense pain in my hip joints. It is now the 4th of July weekend, 2021. In six months' time, I am almost back to normal. It still hurts to pick things up off the floor and to bend down to put on my shoes. Also, any twisting motion of my lower body hurts. I think that Repatha should be taken off the market. I wish that we could band together and file a class-action suit against Amgen. Thank you for reading this."

• lyn...
• Taken for 6 months to 1 year
• May 18, 2021

For High Cholesterol "I started taking Repatha last July. I had been previously taking Atorvastatin. I had side effects, especially muscle pain and joint pain. I had stopped for about 5 months. My current cardiologist said I should try Repatha due to the low number of reported side effects. During the second month's injections (every two weeks), I felt mild muscle pain and weakness. I took Tylenol to help with the pain. It has become progressively more insidious. Yesterday, 5 days from the last injection, I could not get out of a chair, running nose, trouble walking, can't go up and down stairs, severe pain in ankles, knees, hips, and back, loss of upper body strength, itching. A year ago, I could carry two 40lb bags of wood pellets up two flights of stairs. Now, I can't lift a bag off the ground. I advised the cardiologist's office. I was never going to take Repatha again. Haven't heard a word in 5 days. My advice, if you try Repatha, be cautious because side effects may get progressively worse."

• lyn...
• Taken for 6 months to 1 year
• May 18, 2021

For High Cholesterol "I started taking Repatha last July. I had been previously taking Atorvastatin. I had side effects, especially muscle pain and joint pain. I had stopped for about 5 months. My current cardiologist said I should try Repatha due to the low number of reported side effects. During the second month's injections (every two weeks), I felt mild muscle pain and weakness. I took Tylenol to help with the pain. It has become progressively more insidious. Yesterday, 5 days from the last injection, I could not get out of a chair, running nose, trouble walking, can't go up and down stairs, severe pain in ankles, knees, hips, and back, loss of upper body strength, itching. A year ago, I could carry two 40lb bags of wood pellets up two flights of stairs. Now, I can't lift a bag off the ground. I advised the cardiologist's office. I was never going to take Repatha again. Haven't heard a word in 5 days. My advice, if you try Repatha, be cautious because side effects may get progressively worse."

• Hor...
• Taken for 1 to 6 months
• September 4, 2020

For High Cholesterol "I’ve taken 7 doses of Repatha. I have been experiencing extreme weakness and pain all over my body. I have a pacemaker due to a heart condition and very high cholesterol. My doctor felt this wonder drug would help! Well, all this drug has done is ruin my zest for life!! I’m totally exhausted all the time, my vision has become very blurred. Just doing normal daily activities has become very burdensome!!! It has drastically affected my quality of life!! I almost called 911 three days ago as I honestly felt my life was slipping away. I couldn’t stand, couldn’t function!! It took 2 hours before I was able to walk without feeling like my legs were rubber!!! This is THE worst medicine ever!!! If you have the choice, DO NOT take this drug!! I wish I had done my homework BEFORE considering this drug!!"

• Pon...
• Taken for 1 to 6 months
• August 25, 2020

For High Cholesterol "I have previously been unable to take any cholesterol medicine because it bothered my muscles. I have tried five different kinds of cholesterol medication. My doctor was finally able to get my insurance to cover Repatha. I have taken three doses, so for a month and a half. My muscles started to feel tight in both legs and then a weakness on one side. I had a CK blood test a week ago and instead of 14, it was 936! Since nothing has changed besides Repatha, my doctor told me to stop taking it. This is truly a frightening scenario since Repatha is being sold as a medication that does not affect your muscles!"

• Kar...
• January 28, 2020

For High Cholesterol "I've been off of Repatha for almost 2 years. I still have extreme muscle weakness in my legs. I fear this may be permanent. This is the worst drug on the market. When they first brought it out, it was only a two and a half-year-old medication. They were way too quick to bring it to market. It needs to be taken off NOW! Before it harms anyone else. As I've seen, people say we should contact an attorney. I think it's a good idea. I contacted the FDA 2 years ago. Well, you see how well that worked."

• Mar...
• October 18, 2020

For High Cholesterol "The Repatha slowly is making me worse. My health is deteriorating for the last 2 years of using it. It’s awful. It has made my GI really bad from top to bottom. Nausea, constipation, etc. Light-headed, muscle weakness, high blood pressure. Fast heartbeat, extreme fatigue, loss of appetite, weight loss. It’s not worth it."

• Zig...
• February 26, 2020

For High Cholesterol "I have taken 5 injections, and my cholesterol was cut in half! But the side effects are terrible! Legs are weak, feeling disoriented, and very tired! I'm going to quit taking this, not worth feeling bad!"

• Jac...
• April 29, 2020

For Cardiovascular Risk Reduction "After 4th injection, developed weakness in arm and leg, rushed to ER. While they were doing CT and MRI for a stroke, the weakness spread to all other large muscles. Then, in about a week, fatigue came. Also, diarrhea, muscle twitching, nausea, lightheadedness, pounding pulse, runny nose, and a general feeling of a very, very bad hangover. It's been two months and the symptoms wax and wane. A week of improvement alternates with symptom recurrence. All possible tests for electrolytes, antibodies, known systemic conditions, endocrine, etc., are normal. I was stunned when I started reading on forums that people experienced exactly the same presentation of the side effects. Progressive, after several unremarkable injections, waxing, and waning side effects that linger for months after discontinuation. They are totally disabling and scary at their peak. It does lower LDL a lot, but with those side effects, I am not sure it can prolong life. It is damaging something in the cells on the way."

• Ano...
• Taken for less than 1 month
• January 7, 2020

For High Cholesterol, Familial Heterozygous "The cardiologist said it’s a great drug with little side effects. I had back pain and minor sore throat after the 1st Repatha injection. 24 hrs. after the 2nd, I was in the ER. My mouth, tongue, lips, and gums were starting to blister and burn with my throat and esophagus on fire. I was short of breath and having palpitations. I had lots of tests and labs. I received IV Solumedrol and respiratory treatments. I was sent home on 15 days of high dose Prednisone. I’m in the tapering period of the Prednisone and still feeling bad. Severe sore throat, weakness, and palpitations. The cardiologist did labs for electrolytes because I’m having symptoms of low potassium. I was told by the specialty pharmacist that dispensed Repatha the adverse effects could last for months because it could be in my system for a while. I regret taking this drug. I had reservations about it after researching it and reading the patient reviews. Lesson learned. Follow your gut feelings."

• Geo...
• Taken for 1 to 6 months
• February 10, 2022

For High Cholesterol "I started Repatha because I can't take any kind of statins. I am 21 years old and hard workout 5 times a week (gym). With statins, CPK in blood tests was going 800+, and its limits are 175. After the first injection, I was doing workouts like before, but after 5 days, I couldn't even move much pain (CPK was normal). I had to lower the time I was going to the gym. I talked with my doctor, and he told me to do 1 injection each month and not 2. I hoped that my body would get used to it and I would be better. Well, that's not possible. Before, I had so much energy I could sleep like 4-6 hours per day, now, if I sleep 8+ hours, I am still feeling tired. I feel my legs really weak, and I have pain in my muscles (that will stop if I sit on a couch all day). It's awful, you won't have any energy, and you will have muscle pain. It's my only choice because I can't take any statin (260 LDL) with Repatha 150, but no thanks, I have a life to live. If you start it, forget the life you had before. Sorry for saying this, but it's true."

• Sai...
• Taken for 1 to 6 months
• May 25, 2020

For Cardiovascular Risk Reduction "I took Repatha for three months and then stopped it. I had leg pain for two months and could barely walk. Shoulder pain for 6 weeks, could not roll over in bed. Then it got in my hands. Terrible pain in both hands, only opioids would let me sleep for 4 hours. Had to doctor shop to get more. Could not open bottles. Could not use hand grip exerciser. Not at all. After one year I have my hands back, long time! Had to have carpal tunnel surgery on one hand during that time. Hands still weak. Bad stuff."

• Hfl...
• Taken for 6 months to 1 year
• August 22, 2019

For High Cholesterol "I did not tolerate statins because of muscle pain and weakness. I was not aware of the severe side effects that could happen on Repatha. Diabetes was not listed as a side effect on the brochure that my doctor gave to me. While on Repatha, I developed a drug-resistant bladder infection, severe insulin-resistant diabetes, and severe shoulder and hip pain with profound weakness. All side effects have not improved since stopping Repatha a year ago. I am now wheelchair-bound. It dramatically lowered my cholesterol, but not worth life-threatening side effects."

• Mar...
• Taken for less than 1 month
• June 4, 2023

For High Cholesterol "Severe muscle pain and weakness in my legs and nerve pain. Can't sleep at night and can hardly walk, the pain is so bad. My feet feel like they are burning, but on top they are cold. I have been on Repatha for 2 1/2 months. Don't know how long this will continue. I'm a 64-year-old woman."

• MI ...
• Taken for 1 to 6 months
• September 10, 2020

For Cardiovascular Risk Reduction "Elevated LDL, and I could not tolerate statins. Went years without any medication until my cardiologist recommended trying Repatha, saying it has hardly any known side effects. After taking 5 shots, I have to disagree and probably stop taking this miracle drug. It certainly works, after 2 months, my LDL went down 50%. But after about 1.5 months in, I started to have side effects: excessive sweating (head), chills, weak legs, pain and aching in feet, ankles, knees, and groin. Dry and itchy sinuses. Change in vision. Mild back pain and overall fatigue. I stopped taking it for a month, and about 3 weeks after, the side effects were gone. After 4 weeks, I tried to take another shot, and in 4-5 days, all the goodies were back. Works great if you can tolerate it."

• Mis...
• Taken for less than 1 month
• October 25, 2020

For High Cholesterol, Familial Homozygous "With Repatha, I had elevated BP even with maximum BP meds. Ended in ER with BP over 200 with uncontrollable nosebleed. Extreme joint pain and swelling, leg and back pain, and muscle weakness. Flushing, fatigue, headache, and blurred vision. Gained weight (sometimes 5 lbs overnight). Stopped taking and hope side effects go away."

• Can...
• June 11, 2019

For High Cholesterol, Familial Heterozygous "I've been taking Repatha for 1 year. I have always had very high cholesterol in spite of a good diet and regular exercise. Reduced my LDL from 262 lb to 119 lb (I can’t tolerate statins, and I have controlled diabetes with an A1C of 6.5). In the first few doses, I experienced leg cramps and stomach upset, so I reduced my injections to once a month instead of twice, and I have been feeling better. Tried again twice a month, but I experienced muscle weakness, tiredness, blurred vision, tightness in my chest/neck, and heart palpitations. Reduced my injections to once every 3 weeks, but I still had tightness in my chest/neck and felt stressed while breathing. I kept thinking my body would adjust. Six weeks ago, I took an injection and had chest tightness that extended up into my neck for 2.5 hours. Four weeks later, I'm starting to feel normal. During this time, I had two stress tests (one nuclear) and a carotid scan. All results were normal. I wore a heart monitor for 7 days, but haven’t received the results yet. The tightness is back, and I don’t feel right. The drug reduces cholesterol, but it has very serious side effects. My doctor kept saying it couldn’t be the drug, I disagree. The test results show it. I don’t want to create another health issue due to Repatha."

• Mic...
• Taken for less than 1 month
• May 4, 2019

For High Cholesterol "I took my first dose of Repatha on a Thursday and had side effects of flu symptoms, terrible back pain, neck pain, and vertigo within 24 hours. By Monday, I was in the ER with a NSTEMI (a type of heart attack). I was sent home on Tuesday. I was back in the ER on Thursday with a second NSTEMI and 2 angiograms. It's been a month now, and I still have muscle pain, weakness, blurry vision, fatigue, depression, shoulder pain, and hand swelling. And this was from just 1 dose. The doctor said there were no side effects. Yeah, okay."

• Mel...
• Taken for 1 to 6 months
• November 23, 2019

For High Cholesterol "I have been suffering since stopping Repatha after 8 injections. Legs have gone weak and painful to walk. I was okay before I started, but now it’s a challenge to get around. I hate that I even tried it. This is a lawsuit drug - just stay away!"

• Jum...
• Taken for 6 months to 1 year
• June 9, 2019

For High Cholesterol "Don't let anyone tell you to hold off on Repatha injections and then 'try again!' Also, do NOT let your doctor convince you there aren't side effects. This is a dangerous drug if you have pre-existing comorbidities. I have RA (rheumatoid arthritis), need 5 surgeries for vascular blockages in my torso and legs, and 4 coronary stents are placed. My RA symptoms of joint pain have worsened with the Repatha, but my biggest negative on this drug is increased blood pressure and chest pain. It's very dangerous when I'm already a heart patient! Think carefully about what your medical issues are and whether you want to risk them worsening. New problems for me are dizziness, sudden gut pain, anxiety, visual disturbances, nausea, and leg weakness. Yes, my cholesterol went from 300 to normal, but even taking an injection every 3 months has incapacitated me and exacerbated my medical issues!"

• Anonymous
• Taken for 5 to 10 years
• October 25, 2024

For High Cholesterol "In 2008, my legs began aching and losing strength. Hypercholesterolemia. Through the years, they tried different brands and strengths of statin meds: Lipitor, Atorvastatin, Pravastatin, etc. The pain and weakness continued growing worse. It reached the point where I could hardly rise from a sitting position, with the constant pain becoming unbearable. The statins were correcting my cholesterol readings but were causing the weakness and pain in my legs. My doctor began reducing the dosage from 20 mg to 10 mg per day. The pain and weakness continued. On March 17, 2017, I stopped taking statins altogether. Within 10 weeks, the leg pain and weakness were gone, but my cholesterol levels rose. I went back on the weakest dosage, trying first to stagger to every other day, then three times per week, then once a week. On 6/28/2019, my cardiologist stepped in, putting me on Repatha SureClick 14 mg once every two weeks. The pain and weakness are gone. Cholesterol numbers are great! I'm back to enjoying life at the ripe old age of 82!"

• Mas...
• March 27, 2017

For High Cholesterol "I have inherited familial high cholesterol. At age 36, I had quintuple bypass surgery. At age 46, 56, 63, and 65, I had stents due to blockages. I've been taking statins for 30 years despite severe muscle pain, currently Crestor, and started Repatha injections every two weeks shortly after it became available. I attribute the shortness of breath I have been experiencing to Repatha, and my symptoms have grown increasingly worse during this period of time, including weakness and trouble breathing. I have allergies and asthma, which I thought was the source of my trouble breathing, however, my breathing problems have significantly worsened since taking Repatha and are a debilitating side effect. Cholesterol has dropped significantly."

• Lou...
• August 12, 2019

For High Cholesterol, Familial Heterozygous "I have several in my family with high cholesterol... 503 high, so hereditary. I went on Repatha in Oct. 2018. My numbers steadily went down to 235 with mild side effects; some joint pain every now and then. This all changed with my July 2019 injection. I experienced sudden severe hip pain that went all the way down one leg. I could not walk even to the next room. I have had sciatica before, and this was a lot like that, except that it lasted for a day and a half and went away. I wrote this sudden pain off as maybe it was sciatica until my next injection, and the same thing happened, but less severe. I immediately went off of Repatha. I'm still experiencing more symptoms, like muscle weakness and throbbing pain in my arm and hand joints. My feet ache often now as well. I had tried several statins as well, and those also resulted in several side effects that were not tolerable."

• Jmo...
• Taken for 1 to 6 months
• October 7, 2019

For High Cholesterol, Familial Heterozygous "I had a heart stent in my LAD in February 2019. I have had high cholesterol since I was in my twenties. I have been on statins since age 27. My cardiologist wanted my LDL to be less than 70 (it was 87), so he started me on Repatha. I have had two doses, 2 weeks apart, and I'm having shortness of breath, weakness, high blood pressure, heart pounding, and muscle aches. I am not going to take this medication any longer."

• Tom...
• December 27, 2020

For High Cholesterol, Familial Heterozygous "It has been a year and a half since I stopped the Repatha injections after taking them for 6 months. I was extremely active and athletic till Repatha. This drug has made me weak, sick, inflamed, and unable to stay active as before. Even after a year and a half, I continue to suffer from side effects. This medicine is like a poison."