Evolocumab for High Cholesterol, Familial Heterozygous User Reviews (Page 2)

• Mik...
• Taken for 1 to 6 months
• July 16, 2019

"I'm 56 y.o. and have had high cholesterol (family history) even though I exercise and eat healthy. I started oral statins in late 2018 and had adverse reactions to both. I then started Repatha in April 2019 and had no adverse reactions until the last injection last week (July 7, 2019). I took it around 8:00 p.m. and could not sleep all night. I had heart palpitations, which scared me, and had a similar reaction when I tried the statins. I went back to my doctor, and she said she didn't think it was the Repatha, but I have never had any heart palpitations except for the Repatha and the two statins I tried before taking Repatha. My cholesterol dropped to a normal range, but I do not want to continue since the last injection made me feel like I was having a heart attack, and my heart is still racing at night."

• B n...
• Taken for 1 to 6 months
• July 14, 2019

"I have been on Repatha since 12/18. Initially, I had no side effects. Then, after several injections, lower back pain, fatigue, and flu-like symptoms. After my last injection (3 weeks ago), I developed a sore throat with redness and sores. My mouth and tongue are sore as well. Has anyone else had the throat and mouth issues?"

• Gin...
• December 26, 2019

"82 years active female, history of mild stroke 8 years ago and heart event two years ago with placement of stent. 247 high cholesterol on plant-based diet, and unable to take statins. On injection 1, experienced severe back pains and exhaustion and fatigue... constant stomach upset... neck muscles ache and confusion improved some in three weeks, but now have muscle soreness and joint pain. Have history of myasthenia gravis in remission... feels like it is back."

• pro...
• Taken for 1 to 6 months
• February 11, 2016

"I had a heart attack in 2014, my doctor put me on Lipitor 10 to 40 mg a day with very little effect, then 10 to 40 mg of Crestor with very little effect. My LDL was 115 and HDL was 39. Then he put me on Repatha, after 6 weeks my LDL is now 41 and my HDL is 51. The only side effect that I have noticed is a very little bit of congestion. Of course, the big drawback of this drug is the cost. At $14,000 a year, it is going to be hard to get past the insurance company. But it does work."

• Cjl...
• Taken for 1 to 6 months
• November 4, 2018

"Repatha is great for your lipid numbers. I went from terrible numbers to a perfect cholesterol profile. I am a 59-year-old female with 4 stents. I had a heart attack in 2016. I finally got approval on the Repatha, and the first 4 months of treatment I felt great. Then, the 6th month, my neck and left arm started hurting so bad I couldn't stand the pain. I did not want to stop the Repatha because of the amazing cholesterol numbers, but I didn't have a choice. I could not live with the pain. I have been off of Repatha for 6 months now. The neck pain has gotten somewhat better. My left arm is still pretty painful. I had gotten to the point I could hardly use it. It may be a little better now. I sometimes have to pick up my left arm with my right arm to move it. I gave a 2-bar rating because Repatha does lower your cholesterol to perfect. But the side effects are not something I can live with. I don't know what the answer is to this problem, but Repatha is not it for me."

• Lin...
• August 29, 2018

"Bad experience with Repatha, it has been six weeks and still going on. I have had every test possible since I started feeling sick with Repatha. Dizziness, felt nauseous, unbalanced, felt like I was very hot, then would turn ice cold. It was not vertigo or anything to do with my ears. Had an ENT doctor check me, MRI, all sorts of lab work done. Conclusion: reaction to Repatha. Wish I had never started the injections. Prior to this, I was in good health, high cholesterol was the only medication that I took, lived a very active life, have never had any surgeries for anything, very good health for a 74-year-old and not used to being sick. Very concerned. The excruciating headache wakes me up at 3 a.m., will last about 5 minutes, then I turn ice cold, feel fatigue, and then dizzy. Really bad experience. Wish I had never gotten started on Repatha."

• Anonymous
• September 1, 2016

"Tried to take statins in the past and can't tolerate them. Tried the Niacin approach, which didn't work. Three months on Repatha, and my cholesterol went from 330 to 143. No change in diet. Wow. It works! No side effects. Easy to self-inject. Miracle drug we have been waiting for."

• Smh...
• Taken for 1 to 6 months
• August 13, 2017

"Took Repatha on the advice of my doctor since I had very bad reactions to all the statins. After injection 3, I blew up like a balloon so badly I could not wear any of my clothes, I was very itchy, had huge red blotches all over my body, did a lot of throwing up, and my eyes were swollen shut. Still suffering after 2 months off Repatha. Do not take it."

• Mel...
• February 20, 2017

"In September of 2012, I had triple bypass surgery, and in October of 2014, a stent to my left renal artery. I have coronary artery disease due to heterozygous familial hypercholesterolemia. I was on numerous statin medications, and they had nasty side effects. Additionally, they did not lower my LDLs to safe levels. My total cholesterol before my surgery was 300, with high triglycerides and LDL. Due to the high dosage of statin drugs, I had horrible myalgia, malaise, forgetfulness, protein in my urine, elevated blood sugar, and muscle weakness. After being on Repatha for 6 months, my cholesterol has been lowered by 70%. The only side effect from Repatha is stinging at the injection site. It is a miracle drug."

• mil...
• Taken for 1 to 6 months
• June 21, 2018

"I am a 55-year-old woman with total cholesterol above 300 and LDL above 200. Cannot take statins, so the doctor suggested Repatha. I have been taking it twice a month (every 2 weeks). After the 4th injection, I was awake all night but did not associate it with Repatha, so I took another one. Then the doctor luckily told me to stop. Even now, 19 days after I took the last injection, I need to take a high dosage of melatonin to sleep at least a few hours. I am not myself, my body is tired, but my mind is alert all night, my hands and feet burning. I don’t know the new levels of cholesterol yet, but I do not seriously mind. I just hope this will stop soon, and I will return to how I was before. Beware, they do not even list insomnia among side effects!"

• Jus...
• Taken for 5 to 10 years
• October 7, 2020

"I was in the initial investigational group (lab rat), which started 5 to 7 years ago for this drug and just left in February 2020. I was included in the study because of a stroke at 49 and a heart attack at 51, plus heart attacks and strokes have been the cause of death for family members. Honestly, with cholesterol at 500, I had little hope anything would reduce it. The statins hurt me with side effects, so Repatha was worth a try. One of my other physicians accidentally gave me my blood work, and I was shocked to discover after only a few months my cholesterol and all lipids were reduced to normal levels. In particular, my cholesterol was now around 100. I left the study group in February 2020 and had a series of TIAs beginning in August 2020. I asked to be put back on the drug and am currently on it. I am pleased with the results."

• Lvp...
• Taken for 1 to 6 months
• February 7, 2018

"Drug definitely works if you can live with horrible side effects. They started after the 3rd injection and progressively worsened, including severe back and shoulder pain, fingers, and joints. Also, upset GI tract. Two weeks after the last injection, I am still in great pain and hope this has not ruined my quality of life. I have stopped the med and notified the company and FDA of these side effects."

• Cyn...
• September 21, 2019

"The worst experience. Don’t take it. Am going to report to FDA. Bad drug, can’t use left leg, gives out on me, severe muscle pain all over, pelvic pain where leg joins body, affected area back and severe nerve pain, tremendous pain over the last 3 months, causes tremendous issues with muscles. Apparently, a lot of trials not reliable. Is appalling! Don’t know if I will ever get better. So debilitating."

• Anonymous
• Taken for 1 to 6 months
• July 27, 2022

"I have taken 7 injections of Repatha. I started with the 2-week injections, which caused side effects of leg, ankle, shoulder pain, and also a runny nose. I decreased the injection to once a month. I have muscle pain, and now severe diarrhea, nausea, which started within 12 hours of injection. I'm weak, and my legs hurt. I will never take this poison again. I hope I get through this."

• hel...
• Taken for less than 1 month
• May 22, 2023

"This is said to be the wonder drug, however, my past with statins and non-statin shows otherwise. Shortly after the second injection, I had flu-like body aches and generally felt unwell. I feel it affected the quality of my life. I'm stopping immediately. I'm hoping there is something else that can help me."

• Bur...
• Taken for less than 1 month
• April 10, 2019

"Horrible burning pain in abdomen and back within 36 hrs of the 140 mg injection. It is day 10 and am still in horrible pain. The manufacturer insisted that this reaction is rare and were not able to offer me an antidote. Can't wait until levels drop."

• Tex...
• Taken for 1 to 6 months
• September 12, 2016

"Age: 40 weight: 170 pounds height: 5' 10'' Had heart attack at 35, have 5 stents. Cholesterol prior to the attack 280... Have been on the max dose of statins for the last 5 years, and cholesterol has been at 180. No additional improvement with Zetia, so discontinued. Started Repatha in addition to 40 mg Crestor about 5 months ago. Total cholesterol has been at about 80 since the first month (HDL 50, LDL 30, tri g 55). No side effects with statins or Repatha."

• Jen...
• April 22, 2021

"It has been 6 months since I took one injection of Repatha. I still experience flare-ups of muscle and joint pain, as well as muscle weakness and fatigue. I am a 65-year-old woman of smaller stature. My CRP was over 3 times normal after the one injection, gradually reducing to normal over many months. This medication can cause side effects that last a very long time and greatly affect quality of life. Beware!"

• Joh...
• April 20, 2018

"I have been on the experimental drug Repatha for three years through my doctors. I agreed to take Repatha because I was taking the maximum dosage of the statin drug Lipitor. Lipitor was causing severe back, neck, and shoulder pain, and I felt like an 85-year-old man even though I was barely 58. I have been taking Lipitor for 28 years, so I'm sure it had some effect on my body. After taking Repatha, three injections every two weeks, I started noticing that I had severe back and leg pain. I also have severe hand and thumb discomfort where I can barely open a bottle. I had X-rays taken of my thumbs only to find most of the cartilage has disappeared. I've had both menisci repaired in both my knees. I am overweight, 270 pounds, and I am 6 foot 1. I noticed after taking Repatha that my eyes watered continuously, and I sought medical attention, saying it was dry eye. Again, I feel like an 85-year-old man, I can barely walk up."

• Ter...
• Taken for 5 to 10 years
• August 12, 2023

"I have been on Repatha for almost 7 years. I am monitored by a lipid specialist at a lipid clinic an hour's drive from my home. I took a break for about a year after being on it as there was no coverage for it after receiving it for free from the Repatha Ready program initially. My cholesterol numbers have never been better. With limited use coverage, I started taking it again and have done so ever since. Now, I take it once a month with the little machine that automatically injects it. I have never experienced any side effects that I can think of from taking Repatha. I had terrible side effects from taking statins, with a chronic cough day and night that would not go away until I stopped taking them. I was on Lipitor at first and then tried Crestor with the same side effect results. That was the reason I started Repatha. I am surprised to see so many serious side effects reported here, which worries me, of course, and I will keep an eye open in case I start to suffer from similar."

• dot...
• Taken for 6 months to 1 year
• January 1, 2018

"The first injections were fine. Then I started having muscle, joint, and overall body pain, which was very severe. Continued on drug several more months, and although cholesterol lowered from total 212 lb to 158 lb, the pain has become unbearable. I stopped after 6 months, and a month later, only moderate improvement of body pain. I hope the muscles are not damaged."

• Pat...
• Taken for 1 to 6 months
• November 6, 2019

"Had 2 injections so far and absolutely no side effects. Unable to tolerate statins, including Zetia. Statins messed with my liver enzymes, and I had severe liver pain while on them. Cholesterol 296 and triglycerides so high at 411, that my LDL would not register. I am hoping Repatha is my miracle drug because I don't want to die for high lipids. By the way, I have a terrible back with spinal, joint, and disc issues and disease, and I have found no pain other than my normal daily pain with the 2 Repatha shots I had. Wish me luck. Insurance keeps denying it, but my cardiologist is giving me samples until we finally get approval from the insurance company."

• Fed...
• Taken for 2 to 5 years
• August 2, 2022

"I have very high cholesterol, up into the high 300s. I'm lean and an avid exerciser. I have been on every statin with no results, so doc put me on Lipitor (40 mg) and Zetia. I was so dizzy due to the Zetia, and my cholesterol was barely lowered. So next up was Repatha - I was side effect-free for a year until I developed massive hives, constant low back pain, flu-like symptoms (all within the last year and a half), and now I can't walk without feeling like falling down. I'm going in for a brain MRI, electrocardiogram, and ultrasound of the carotid artery - bloodwork all normal. Meanwhile, my sinuses are full, and my quality of life has gone downhill from using this drug. I've gone from walking 9 miles a day to not being able to walk. My cholesterol is down to 200. If my tests come back normal, I'm getting off this drug."

• Sta...
• Taken for 2 to 5 years
• November 30, 2018

"Have been taking for over three years. Repatha, along with Livalo, has been nothing short of a miracle. ZERO side effects, and my total cholesterol has gone from over 700 to 110. I experienced severe leg pain on both Lipitor 80 and Crestor 40. The self-injector shots are quick and easy, and despite how many times Familial Heterozygous high cholesterol has tried to kill me, it just may not succeed this time."

• Enr...
• Taken for less than 1 month
• August 13, 2017

"I have taken two 140 mg two weeks apart. I know that I am just starting. For the first four days after each injection, I felt 'tension' and did not feel like being social. Minor body aches, weakness, and fatigue."