Evolocumab for High Cholesterol, Familial Heterozygous User Reviews

• NJ ...
• Taken for 1 to 6 months
• February 28, 2025

"I was prescribed Repatha to take every two weeks, and during the first month, I felt good. However, after taking it for six months, I had very negative side effects that included clogged ears, constant runny nose, post-nasal drip, some congestion, stomach that was extended and painful, lower abdomen that felt like a urinary tract infection and gynecological problem, which required another doctor's exam, and lower back pain radiating to my legs, making walking painful. It slowly went away during a three-month period after stopping, which I believe was the time frame that the half-life of the drug remained in the system. The blurry vision has not reversed, and I have an appointment with an ophthalmologist. I have always been healthy and don't know if this was related to the recent surgery needed for breast cancer that developed just this year. Even though it did lower my cholesterol, I would not recommend it."

• Anonymous
• July 17, 2020

"I have been on Repatha for 5 years. As a result, I have developed chronic sinus infections, flu, shortness of breath, pain in my lungs, stomach pain, and most recently fevers, ear pressure, dizziness, and severe headaches. I suspected the medication was causing my problems over a year ago. I spoke with a nurse from Amgen who played it down, and so did my doctor. I was referred to an allergist who, after a full pulmonary function test, allergy test, and CT scan of lungs, concluded I have non-allergic rhinitis. I was constantly prescribed antibiotics and steroids for the symptoms. Sometimes they worked, and many times they didn't. I have seen an infectious disease doctor, a hematologist, an ENT, and a pulmonologist. None of them could determine why I am suffering. I have an FMLA for intermittent leave because sometimes I can't get out of bed. I took my last injection last Saturday, the day the headaches started, and I have had them every day since. No more!"

• Tru...
• Taken for 2 to 5 years
• May 29, 2024

"Lowers cholesterol—very good on this. Side effects: I am miserable for at least two days, sometimes a week or more, with flu-like symptoms, back pain, muscle and joint pain, headaches, itching rash, mysterious internal pain, fatigue. I check often to see if another med has been discovered because I am worse off with statins, and the rash is worse too. I suspect Repatha is responsible for the recurrence of shingles and PHN that I have."

• Joe...
• Taken for less than 1 month
• November 4, 2020

"Add my voice to those who have experienced horrible side effects from Repatha. After one injection - terrible muscle and joint pain all over my body - much worse than the three statins I tried previously. I will never touch this medicine again. Diet modification and exercise are the only treatments I will try ever again."

• Mid...
• Taken for 1 to 6 months
• January 22, 2020

"After my 6th dosage of Repatha, I would rather die. I have four stents along with torn tendons and connective tissue disease that can't be explained. Frequent urination and problems. Neck, leg, and back pain do not allow me to sleep. Severe headaches, but the newest side effects are very scary to me...stomach cramps, diarrhea, and vomiting for days after the injection, which I am sure will be my last. I am saddened after reading the reviews that this will last for quite some time. Only 55, feeling hopeless, and feeling like a 90-year-old every day is not the quality of life I was trying to accomplish. I hope there is help on its way. Thank you for the truths. I thought I was alone."

• Ale...
• Taken for less than 1 month
• August 8, 2019

"Before starting taking Repatha, THINK, THINK, and THINK again! The cardiologist and all the nurses I've seen made out that Repatha is a godsend and has no side effects whatsoever! If I knew then what I know now, I would have never touched this POISON with a barge pole!! A couple of hours after administering the first injection, I felt nauseous, my stomach was on fire, and I had a really bad migraine! The next day, I started vomiting, had a high temperature, and a very sore throat. The third day, my mouth started to smell really bad! My gums and tongue became very painful, it's like I was rotting away from the inside. It has been a month now since I took my first and last injection, and I'm still suffering from the debilitating side effects. I'm recovering, but very, VERY slowly. Don't make the same mistake that I did! Don't let anyone persuade you into taking this so-called medication! You will really come to regret your decision. Research the drug and ask the people who took it before you make a decision!"

• Phi...
• Taken for 1 to 6 months
• June 23, 2020

"I was on Repatha for one month and saw my lab numbers dramatically improve until I developed severe leg pain, similar to that which I had while taking statins. After I stopped, my total cholesterol and LDL shot up higher than before I started. They have remained high after 6 months. I'm thin, eat mostly vegetarian and exercise every day. Has anyone quit and seen their numbers remain high this long?"

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

"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."

• Pai...
• June 16, 2019

"I took 7 injections of Repatha in an attempt to lower LDL because my doctor was going to put me on the non-compliant list. When I began having physical symptoms, I thought it was because I was working out too hard. I am 71 and was getting ready for a 3-month walking vacation in Europe, so I wanted to be able to walk several miles a day. I have been completely off Repatha since the first week of January and am still having extreme pain in my thighs (injection points) with loss of energy and muscle pains throughout my body. I feel like I'm walking on a tennis ball in my left arch and have stabbing knife pains in my right leg. They have really not dissipated since January, and it is now the middle of June. I am livid that my doctor talked me into this because I couldn't do statins and did so much research on cholesterol that I know how ridiculous it is to be forced to take this garbage. I am furious... I wonder if that is a side effect as well... I'm furious a lot lately."

• Non...
• Taken for 1 to 2 years
• October 7, 2019

"I was leery about starting a drug that hasn't been on the market that long and also my distrust for pharmaceutical companies. Repatha worked and brought down my LDL, but there is a cost. In the beginning, I'd just have cold symptoms and some fatigue, which only lasted a few days, but with time I would eventually develop more side effects that lasted longer, such as PVCs, and now I get burning in my feet, hands, and throughout my body. The doctor said I may have neuropathy, but when tested at the time, it showed no damage. I'd stop Repatha for two months and everything would settle down, but my fear of having a heart attack would cause me to try it again. I have taken two more shots, and now the burning is back, and I had flu-like symptoms that have caused me to stop exercising and miss some days of work too. I don't know what I'm going to do, but I don't want to live my life suffering like this. I also don't like when doctors don't want to put the blame on the medication that they know nothing about."

• Can...
• June 11, 2019

"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."

• joh...
• Taken for 5 to 10 years
• August 19, 2024

"Helped to lower LDL substantially with minimal side effects up to 5 years. After the fifth year, signs of systemic inflammation created multi-organ problems, and therefore the drug was discontinued with improvement of symptoms, but existing damage could not be reversed."

• Rag...
• Taken for 5 to 10 years
• January 22, 2025

"Repatha has been a game changer and probably a lifesaver. I could not take most drugs, statins, that are prescribed for high cholesterol. My lipid doctor said that even if I only ate grass and drank water, I would still have high cholesterol. Several years ago, I had a stroke that thankfully had no lasting ill effects, but it was a signal that something had to be changed in my treatment. I found a doctor that specialized in treating familial high cholesterol, and he prescribed Repatha. It has lowered my overall numbers, and especially my LDL number. The one negative issue I have had was getting my health insurance to cover it. Additionally, when I went on Medicare, the cost increased greatly."

• Lou...
• August 12, 2019

"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

"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

"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."

• Gar...
• March 24, 2016

"On my 4th shot. I have had a lot of muscle pain, especially in my left leg. Major spasms. Doctors think it is a slight bulging disk, but they have never seen this type of pain with a bulging disk. Still not sure if it is associated with Repatha. Anyone else had this kind of pain?"

• Des...
• December 11, 2019

"I was on Repatha for 8 months, noticed some mild changes in my memory, writing, vocabulary, but could live with it. Then, 3 days after the last injection, couldn't remember many words, names, I had very slow thinking and recall. I am now 2 months off Repatha, and my condition is not improving. I began treatment with Repatha because I had memory problems with statins, but after stopping statins, memory always was coming back. I am so desperate, I don't know what to do."

• Cli...
• Taken for 1 to 6 months
• February 8, 2016

"All statins gave me severe flu-like symptoms of muscle aches, fatigue, etc. After two months of using only Repatha, my overall cholesterol was reduced from 248 to 82, triglycerides from 276 to 107, and LDL from 166 to 30 with no side effects."

• pig...
• Taken for less than 1 month
• March 29, 2020

"I have very high cholesterol and statin problems. Started Ramipril a few weeks after having two LAD stents in January, but it took a long time for Repatha approval, so I have had just two injections. I also have chronic migraine, which was improving with Aimovig. Since starting Repatha, I have had daily migraine and was having middle of the night coughing. Also, very dizzy on awakening now and any bending over. Also, was very nauseated. I stopped Ramipril a few days ago, and cough and nausea stopped, but not headaches or dizziness. I do not have high blood pressure or diabetes and am 61. Cannot stand a daily migraine, I don’t think I can take Repatha."

• Ter...
• Taken for 1 to 6 months
• May 7, 2021

"I began taking twice-monthly Repatha in November 2020 on the advice of my cardiologist. I am a healthy and active 68-year-old female with familial hypercholesterolemia. Previously, I had tried four different statins and various doses, all of which resulted in considerable muscle pain and night cramps. Things seemed fine until my third Repatha injection when I began having severe pain in my right arm and shoulder. I didn't link the pain to this, so I continued taking my injections, eight altogether, until my final dose at the end of February. By then, I was experiencing increasingly severe pain in both shoulders and arms, weak leg muscles making it difficult to stand, dizziness, and fatigue. Although Repatha dropped my LDL from 177 to 68, the side effects are debilitating. I am done with Repatha and statins. I stopped taking Repatha in late February, but two months later, the side effects continue to wax and wane. I am praying my system can recover and my life return to normal."

• Lii...
• Taken for 6 months to 1 year
• February 21, 2017

"I have heterozygous familial hypercholesterolemia. I also have coronary artery disease as a result. The statin medications caused me to have myalgia, malaise, protein in my urine, increased blood sugar levels, weakness, and forgetfulness. After having triple bypass surgery 4 1/2 years ago, my LDL was still too high despite being on a high dosage of Crestor and Zetia. I started Repatha 6 months ago, and my LDL is at a record low, and my HDL has increased. The only side effects are slight burning at the injection site and minor flu-like symptoms that last for a day. In my opinion, Repatha is a miracle drug."

• Nan...
• Taken for less than 1 month
• September 14, 2019

"I have the gene for high cholesterol. I had bad side effects from statins. Livalo was tolerable. Somewhat. I took my first Repatha injection 2 weeks ago. Mild flu-like symptoms the first eve. General malaise after that. Back pain week two. Can't roll over in bed, due to back pain. My eyes are twitchy, blurry, and jiggly. I feel like I have lead in my arms and legs. After reading everyone’s comments, I’m stopping this drug. I’ve always been sensitive to meds. It’s not worth the side effects."

• ski...
• Taken for 1 to 6 months
• April 25, 2018

"I have administered 11 doses of Repatha and experienced severe back muscle pain and extreme weakness and pain in both knees after the 3rd injection. I thought it was from the statin drug the doctor prescribed. I discontinued the statin, but the pain and weakness persisted and even appears to have worsened. I stopped the Repatha eight months ago, but the pain and weakness have remained the same. I am 82 years old and in good health despite some severe artery blockages. I would have elected to do statins only had I known the pain would be so severe and almost constant. I strongly urge anyone considering Repatha to look at all these reviews first because the pain is there 24/7. Thank you for allowing me to tell my side and may God bless you all."

• 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."