Repatha and Headaches: What Users Say

• Woo...
• Taken for 2 to 5 years
• February 29, 2020

For High Cholesterol "I had a heart attack in late 2004 and double bypass in early 2005 at 42. I can't tolerate statin drugs, so my doctor said there was a great new drug out there called Repatha. It was a miracle drug, so I started taking it. After about two years, I started having lots of muscle pain, cramps, and severe headaches. Five months ago I had a stroke. At the time, I thought I was having a migraine. My doctor took several MRIs, X-rays, and CAT scans but could not determine what caused the stroke. I suspect that Repatha was the cause. If you are on Repatha, please stop taking it right now. It is not worth it. This drug should be taken off the market fast before someone dies. I could have, but was very lucky."

• Bil...
• Taken for 1 to 6 months
• August 21, 2020

For High Cholesterol "Started Repatha because I am hypersensitive to statins. Took 4 shots. After the 3rd, I started feeling the side effects. Slight rash on chest. My right nipple is very hard all the time (I'm a man) and painful. Over two months spread to left side with similar result. Wearing a bandaid on both of my nipples to reduce irritation. Face is red and very dry. Eyes are slightly bloodshot. Slight headache all the time (not enough to stop me from my usual activity). Last shot my palms itched for a while, but went away. Blood work taken: prolactin levels abnormal, A1C elevated, blood sugar doubled. Doctor ordered brain scan for pituitary gland (prolactin). Negative. Doctor told me to stop taking Repatha. I hope these symptoms go away. Oh, and by the way, it did lower my cholesterol."

• Flu...
• March 30, 2021

For High Cholesterol "Took Repatha on Feb. 15, 2021. Leg started swelling. Called dr as leg went pins & needles. Next day cough, sneezing, nose runny. Next day all of the above with swollen lip, sores in mouth, cheeks breaking out, face sores, & forehead. Itchy face & bladder feels stiff, can not pee, it is strong smelling. Ankle swollen, vagina swollen, had asthma attack & went to ER. Stuffy nose, headache, watery eyes. BP running high 152/92. Woke up at 3 am not feeling good, bp 189/91, ears hurt, face hurts. Post nasal drip, ears ache, coughing, face red, & sores. March 5th going down chest with itchy red bumps. It's continuing in cycles 11-17 days up to 93 days. It is March 29 & I have sores on face, ears ache, throat hurts, sores came back in mouth, & now leg pain. I'm exhausted. This medicine is poison to me. My cholesterol numbers will just have to be high. I can't take statins. NEVER DOING THIS AGAIN. I hope I survive it! Called the FDA."

• Anonymous
• July 17, 2020

For High Cholesterol, Familial Heterozygous "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

For High Cholesterol, Familial Heterozygous "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."

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

For High Cholesterol, Familial Heterozygous "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."

• dis...
• Taken for 1 to 2 years
• September 13, 2022

For High Cholesterol "I started Repatha in May of 2021, it lowered my cholesterol quickly to 214 within a few months. I was happy with that result, but I knew something was really happening with my health. I told my husband something had changed in the last 6 months with my health. I didn't think about Repatha, I was told by my cardiologist and pharmacist there were no side effects from Repatha. I kept using it, and by January 2022, my mouth was totally covered inside with blisters and sores, I could barely walk, I was severely depressed, had severe headaches, and hip pain. I stopped taking it and tried it again 3 months ago to see if the symptoms were caused by something else! I kept thinking the doctor and pharmacist said no side effects. I am sitting here with a mouth full of blisters and sores, so weak I can hardly do anything, can't go for my daily walks, which I loved. I survived cancer twice, chemo and radiation were bad, but nothing like Repatha. I hope I can recover and have some quality of life left."

• Spa...
• May 6, 2019

For High Cholesterol "My first injection of Repatha was somewhat uneventful. The second injection began a nightmare! After about 2 days, I experienced dizziness, almost passed out 3 times, and had a headache that was so bad along with unbelievable back pain. I already have chronic back pain, but it was so bad I thought I would die. I called my cardiologist after suffering for 7 days, and she insisted it wasn't caused by Repatha and that I should visit my primary. I did, and she did blood work, a flu swab, and urinalysis. Everything came back normal. She reviewed the side effects of Repatha and said she thought it was from the Repatha. I started this medication reluctantly. It had been prescribed several months earlier and after reading reviews, I opted out. The next time I went to my cardiologist, she assured me that the side effects were minimal, so I told her I would try it. She said because my LDL was so high and because I had already had one stent, I really needed this drug. I wish I had not listened to her."

• 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."

• 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."

• DCv...
• Taken for less than 1 month
• October 3, 2018

For High Cholesterol "After the second dose, I had nausea, missed a day of work for vomiting, no appetite, felt weak. Four days later, I had intractable diarrhea. Called the Repatha nurse line. She read statistics about side effects to me. Asked her for help/advice. She said they don't give advice on dealing with side effects. Within an hour, I collapsed. My mom called 9-1-1. Went by ambulance to the hospital with severe dehydration, which caused acidosis. Spent three days in the intermediate care unit of the hospital. My palms and the soles of my feet itch. I have a hacking cough, head and muscle aches, and blurry vision. The doctors had no answers and treated me for a virus that usually only causes a cold. Read about similar reactions. I asked if it could be from the Repatha; the doctors didn't know what it was or what it was for (at a teaching hospital). Wish I'd done more research. When my doctor prescribed it, I asked if it was safe. He said it was. I believed him, like most patients would their doctors. He was wrong."

• San...
• Taken for 1 to 6 months
• June 30, 2018

For High Cholesterol "I am a 71-year-old male and in relatively good shape. I was working out and riding my bike 10-15 miles a day. I have chronic high cholesterol (300 overall). I cannot tolerate statins. I started taking Repatha on March 3, 2018. Shortly after the second injection, I developed sinus issues (bloody nasal discharge), headaches, muscle/joint pain, muscle weakness, arrhythmia, diarrhea, and severe debilitating back pain. I did not immediately make the correlation with the Repatha injections. I made an appointment with my GP, and he took me off Repatha. My last injection was May 13, 2018. The symptoms have improved but are still present. I only hope the side effects are reversible. The quality of my life has been significantly impacted. I am disappointed. Repatha did lower my cholesterol, but the side effects are hardly worth it. Research this drug before you inject it."

• Mic...
• Taken for less than 1 month
• March 10, 2018

For High Cholesterol, Familial Homozygous "Tried Repatha and suffered a number of side effects. There was a lot of pain and swelling at the injection site. Later that evening, suffered pretty severe abdominal and back muscle pain, headache, exacerbation of asthma symptoms, and general malaise. Most of these symptoms continued for 5-7 days. The symptoms were very similar to those I suffered after taking several flu shots. Figured there might be some connection and discovered they both contain polysorbate 80, an emulsifier. Will not be taking this drug again."

• Tau...
• Taken for 1 to 6 months
• April 30, 2019

For Cardiovascular Risk Reduction "Not tolerating statins and having to maintain LDL between 70 and 100, my cardiologist offered me Repatha of 140 every 15 days. After the first dose, I started having jaw pain, neck pain, headaches, and pain in my hands, legs, and feet. Another heavy side effect is insomnia. After 15 days from the first dose, LDL has decreased from 120 to 60, a very potent drug, but even with a single dose a month, the side effects are terrible. Unfortunately, I gave up Repatha."

• Lin...
• August 29, 2018

For High Cholesterol, Familial Heterozygous "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."

• dre...
• Taken for less than 1 month
• August 1, 2019

For High Cholesterol "Received 2nd dose on 14-day injection program, and 10 days after 2nd dose experienced severe reaction to Repatha. Adverse symptoms were dizziness, lightheadedness, headache, severe intestinal distress, body aches, burning skin sensation in upper body, pounding heartbeat, malaise, general weakness, chills, increased BP and heart rate. Adverse symptoms lasted 4 days before gradually subsiding to mild body ache and tiredness."

• BWi...
• Taken for 1 to 6 months
• May 29, 2018

For High Cholesterol "I am a 54-year-old male. I have had heaps of stents and 5 arteries bypassed, which scarred closed in less than 3 years. I started Repatha as a last resort, as my cholesterol was VERY high, and my cardiologist said this drug has NO SIDE EFFECTS IN ANY OF HER PATIENTS. My first injection, I felt lethargic for 2-3 days after the shot. I started having sinus issues after the first week and neck pain by the end of the 2nd week. After the 2nd shot, again a very lethargic feeling. After the 3rd week, everything fell apart. Severe headache, neck had to be iced down, nose no longer worked, vomiting, and very bad diarrhea for 6 days in a row. I was coughing, especially when laying down, coughing up milky-colored mucus constantly. One minute I am freezing, and 15 minutes later, I am burning up. I am feeling so miserable. I hope this medicine gets out of my system soon. No one can survive feeling like this for very long."

• Anonymous
• Taken for 1 to 6 months
• October 20, 2019

For Cardiovascular Risk Reduction "I have been taking Repatha for 3 and 1/2 months. At first, I was fine, my cholesterol went down, and by the third month, I was getting blurred vision, headaches, severe fatigue, burning in the feet, and muscle pain in the back of my neck. It's gotten to the point where I can't even work. I'm so, so tired, short of breath, wheezing, and urinating a lot. Although my cholesterol went down, it's not worth taking Repatha if there's no quality of life for me."

• Ano...
• August 21, 2019

For High Cholesterol "10 days post first Repatha injection, and despite knowing how to inject it, I have the most ridiculous bruise on my stomach. On day 9, I went to the ER because I suspected I had another rare sphenoid sinus infection, which is quite rare. CT scans were negative, so they say, despite giving me medication, saying maybe it's starting because it didn't seem they wanted to blame it on Repatha, and perhaps these symptoms are something that I am used to with this sort of chronic infection. I have headaches I can hardly describe. I don't necessarily feel lightheaded but like my head is heavy, swollen, and the pain moves around. I get bouts where I feel dizzy and the world is spinning. I am having sensory issues with sound, light, and motion. I thought a slight burning pain for a few hours in my arm was weird a few hours after my injection into my stomach was the worst of it, but I had no clue what was in store. I am barely starting day 10, but I am done. I want this out of me! Never again."

• Lu ...
• Taken for 1 to 6 months
• August 17, 2018

For High Cholesterol "I am a 73-year-old woman. My health was not perfect, but normal for a woman of my age. Then I started taking Repatha shots every 2 weeks. The worst mistake I ever made. It began with a very sore throat, at the same time severe headaches (I had never had a headache in my life). Went to an ENT for my throat, after 2 tests for strep throat, and went to an ophthalmologist for my eyes, which felt like they were being pushed out of their sockets. Neither could explain my pain. THEN the worst pain ever in my lower back and legs. I can hardly walk. It’s been 6 weeks off the drug, still no relief. I now have no quality of life. Please tell me this drug will leave my body. I would rather die from high cholesterol than live like this."

• Way...
• Taken for 1 to 6 months
• March 26, 2019

For High Cholesterol "WARNING: Repatha comes with very serious side effects. 1) SEVERE FLU... cough, sore throat, congestion, massive mucus, headache, etc. 2) EXCRUCIATING BACK PAIN... could not walk for two weeks, able to walk now, but back pain continues three months after the last injection. 3) DIGESTIVE PROBLEMS... heartburn. 4) CONFUSION... difficulty concentrating. 5) INTERNAL SHIVERING... but not cold or external shivering. 6) WEAK... due to muscle and joint pain. All side effects have improved since discontinuing use three months ago. Back pain, internal shivering, and some muscle/joint pain continue after three months."

• Ang...
• Taken for less than 1 month
• March 18, 2018

For High Cholesterol "I took one shot of Repatha. I began to sweat profusely, could not swallow. I felt like I was shot in the left side of my head. Blood pressure soared to 200/102, and I still cannot control my blood pressure with three blood pressure medications after two years. Blood sugar went over 400. I began to choke and could not breathe. My breasts began to grow. I am a male, yet I began to go through what seemed to be female menopause. Doctors kept telling me it is a new drug, and they have no idea how to treat it. I was told it is a monoclonal antibody made from a rodent's spleen. My pituitary gland, as well as my thyroid, are damaged. I continue to have menopausal symptoms. I have seen numerous doctors and been admitted to hospitals, but nothing helps. I am having other issues. The suffering goes on. Pain in my head, trouble swallowing, sweating, mood swings, high blood pressure, high blood sugar, swollen breasts, high thyroid levels. It is like my body is fighting against itself."

• int...
• Taken for 1 to 6 months
• October 28, 2019

For High Cholesterol "Started Repatha, and first dose felt no side effects. After 2nd dose, 2 weeks from 1st dose, started having intestinal distress, severe body ache, headache, chills, sweats, felt so bad almost went to hospital emergency room. This lasted several days until I started taking Tylenol and Benadryl. Effects finally diminished after 8 days. Intestinal distress still continuing 3 months later and after several doc visits and CT scan. Still not over this side effect reaction as it comes and goes several times a week."

• kei...
• Taken for 1 to 6 months
• July 16, 2022

For Cardiovascular Risk Reduction "I'm from the UK. I wasn't tolerant to statin tablets. I had started on 80 mg atorvastatin, then my dose went down to 40 mg. I then got changed to pravastatin 10 mg - still no joy, joint pains all the time. I was then put on Repatha, and within 2 weeks, my cholesterol went from 5.3 down to 3.4, no side effects. That was early days, but then over the weeks, my joints started to hurt, I had constant headaches, UTI infections, collapsed lung, throat infections, post-nasal drip, severe low back pain. I can't walk from one end of the house to the other without pain. I have chest pain, but I also suffer musculoskeletal issues, so hard to say if it's Repatha causing that pain, but it probably is. I got blurry vision, now a tingling in my left arm and leg, and sometimes in the face. I've done urine tests that have shown my liver has issues. Now 16/7/2022, 3:28 AM, and I haven't slept properly for months due to my anxiety and depression being at an all-time high. I just don't know which way to turn. I get no help from GP or hospital and don't know who to report it to."

• Ira...
• Taken for 6 months to 1 year
• January 4, 2022

For High Cholesterol "While Repatha did lower my cholesterol significantly, I suffered from severe fatigue, headaches, low backache, and an overall feeling of being not well. My symptoms slowly cleared up after about six weeks post my last dose."