User Reviews for Evolocumab to treat High Cholesterol, Familial Heterozygous
Also known as: Repatha
Evolocumab has an average rating of 5.1 out of 10 from a total of 58 ratings for the treatment of High Cholesterol, Familial Heterozygous. 34% of reviewers reported a positive effect, while 45% reported a negative effect.
Repatha (evolocumab): “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.”
Repatha (evolocumab): “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 Amegen 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 x-ray CT 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, ENT and a pulmonologist. All who cannot determine why I am suffering. I have an FMLA for intermittent leave because sometimes I can't get out of the bed. I took my last injection last Saturday the day the headaches started and I have had every day since. No more!”
Repatha (evolocumab): “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?”
Repatha (evolocumab): “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 sometime. Only 55 feeling hopeless and feeling like a 90 years old everyday 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.”
Repatha (evolocumab): “Before starting taking Repatha THINK, THINK and THINK again! The cardiologist and all the nurses I've seen made out that Repatha is godsend and has no side effects whatsoever! If I knew then what I know now I would of 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 had a really bad migraine! The next day I started vomiting, high temperature and very sore throat. The third day my mouth starting to smell really bad! My gums and tongue become very painful, Its like I was rotting away from the inside. It has been a month now since I took my first and last injection and 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 taking this so called meds! You will really come to regret your decision. Research the drug and ask the people who took it before you make a decision!”
Repatha (evolocumab): “The cardiologist said it’s a great drug with little side effects .I had back pain & minor sore throat after the 1st Repatha injection . 24 hrs. after the 2nd I was in the ER. My mouth ,tongue ,lips , & gums were starting to blister & burn with my throat & esophagus was on fire. I was short of breath & having palpitations. I had lots of tests & labs . I received IV Solumedrol & respiratory treatments. I was sent home on 15 days of high dose Prednisone. I’m in the tapering period of the Prednisone & still bad. Severe sore throat, weakness, & 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 & reading the patient reviews. Lesson learned. Follow your gut feelings.”
Repatha (evolocumab): “I took 7 injections of Repatha in an attempt 2 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 that 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 in 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.”
Frequently asked questions
- Praluent vs Repatha: What's the difference?
- Is Repatha effective without a statin?
- How long should you take Repatha?
- How long do Repatha side effects last?
Repatha (evolocumab): “I've been taking Repatha for 1 year always had very high cholesterol in spite of good diet regular exercise. Reduced LDL from 262lb to 119lb (can’t tolerate stains, controlled diabetes A1C 6.5.) First few doses, leg cramps stomach upset, reduced injections once month instead of twice, feeling better. Tried again twice pr month muscle weakness, tiredness, blurred vision, tightness in chest/neck, heart palpitations. Reduced once every 3 weeks had tightness chest/neck, breathing stressed. Kept thinking body would adjust. 6 weeks ago took injection and had chest tightness up into neck for 2.5 hours. 4 weeks starting to feel normal. During this time I had two stress tests (one nuclear), carotid scan. All results normal. Wore heart monitor 7 days. Haven’t received results as yet. Tightness back, don’t feel right. Drug reduces cholesterol, it has very serious side effects. Dr kept saying it couldn’t be the drug, I disagree, test result show it, don’t want to create another health issue due to Repatha. ”
Repatha (evolocumab): “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 weak, sick, inflamed, and unable to stay active as before. Even after a year and half, I continue to stuffer from side affects. This medicine is like a poison.”
Repatha (evolocumab): “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 last 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 through out my body. Dr. said I may have neuropathy but when tested at the time it showed no damage. I'd stop Repatha for 2 months and everything was settle down but my fear of having a heart attack would cause me to try it again. Have taken 2 more shots and now the burning is back and I had flu-like symptoms that has caused me to stop exercising and miss some days of work too. Idk 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.”
Repatha (evolocumab): “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 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.”
Repatha (evolocumab): “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 the 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.”
Repatha (evolocumab): “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 having shortness of breath, weakness, high blood pressure, heart pounding and muscle aches. I am not going to take this medication any longer.”
Repatha (evolocumab): “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 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.”
Repatha (evolocumab): “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 pain with a bulging disk. Still not sure if it is associated with Repatha. Anyone else had this kind of pain?”
Repatha (evolocumab): “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.”
Repatha (evolocumab): “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,& 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 side effects.”
Repatha (evolocumab): “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 only one else had the throat and mouth issues?”
Repatha (evolocumab): “82 years active female history of mild stroke 8 years ago and heart event two years ago with placement of stent. 247 hi cholesterol on plant mostly diet, and are 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 gravies in remission ...feels like it is back”
Repatha (evolocumab): “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 stroke at 49 and 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.”
Repatha (evolocumab): “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 hard 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 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.”
Repatha (evolocumab): “All statins gave me severe flu-like symptoms of muscle aches, fatigue, etc. After two months using only repatha, my overall cholesterol was reduced from 248 to 82, tri-glycerides from 276 to 107 and LDL from 166 to 30 with no side effects”
Repatha (evolocumab): “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.”
Repatha (evolocumab): “Repatha is great for your lipid numbers. I went from terrible numbers to 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 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 maybe 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.”
Repatha (evolocumab): “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 Dr 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.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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