Evolocumab for High Cholesterol, Familial Homozygous User Reviews

• Valerie
• Taken for 1 to 6 months
• March 5, 2023

Repatha (evolocumab) "I am one of the unlucky individuals who react negatively to statins with elevated liver enzymes, so my cardiologist prescribed Repatha. After jumping through hoops to get it approved by my insurance, I took the first shot. I had some back pain after the first shot but it quickly went away and I was excited that I didn’t seem to have any of the side effects that others spoke up about. After my second shot, I began to experience pain in my toes and feet the next day. It feels like my toes are frozen and burning simultaneously. It’s like I have frostbite on my toes and feet with constant pain. It’s not pins and needles, but I guess it’s considered peripheral neuropathy. I’ve been taking Tylenol to minimize the pain but it never goes away. My doctor says it’s not a side effect of the drug, but there’s no other reason for this pain to have appeared the day after my second shot. I will be stopping this medication ASAP."

• ILeana
• Taken for 2 to 5 years
• September 14, 2023

Repatha (evolocumab) "I have been on Repatha for 5 years now. I have tried many statins, but most of all the ones I have tried cause severe joint and muscle pain. When Repatha came out, my doctor thought this was ideal for me, so he prescribed a 140 mg injection every 2 weeks. Repatha has worked for me. It has maintained my cholesterol from 200 to 160-180. The first 2 years, I experienced side effects of persistent runny nose and some hives. I tolerated the side effects because my cholesterol control was more important. However, in the present, the last 6 months, the side effects have escalated to flu-like symptoms, joint pain, and neuropathy issues which make me sick for 10-12 days a month. I have decided to discontinue the medication. It’s no longer working for me, and I’m not going to sacrifice my well-being for these side effects. They can be debilitating. I think it works for a short period of time but not long term. Hopefully these symptoms will disappear soon."

• Caution
• Taken for 1 to 6 months
• April 17, 2023

Repatha (evolocumab) "Three months on Repatha. Stopping now as I think my problems are side effects of this medication. Very swollen ankle and calf, extreme itching of leg, (recently) swollen lymph node (walnut size) in my neck, and a general malaise. When I go for a walk the itching in my leg and neuropathy in my feet cause great discomfort. Yes, my cholesterol saw immediate improvement and I was hopeful I could tolerate this medication as I cannot tolerate statins. But, the side effects are increasing and are intolerable, I'm afraid."

• zoo...
• Taken for 6 months to 1 year
• October 20, 2019

Repatha (evolocumab) "I am a long term T1 Diabetic, with a familial history of High Cholesterol. I had a triple bypass 5 years ago and was doing really well for about the last 4 years post op. With continual elevated cholesterol numbers, my Dr put me on Repatha. The first 2 injections were ok, with some minor side effects, such as dizziness and pretty bad back pain. I went to my massage therapist ,and chiropractor, and was treated for about 3 months with some relief. I also had a back x ray taken, with no major changes or abnormalities. I must admit, I DID NOT connect Repatha with these symptoms. Now, as far as that is concerned, it certainly did LOWER my bad cholesterol from 289 to 47, but again, at what price??? My major "new" side effects after taking Repatha for 4 months: Dizziness, Blurry Vision, Excruciating foot, leg, hip and back pain, shortness of breath and a rapid heartbeat, joint and strange bone pain and a runny nose."

• milep...
• Taken for 1 to 2 years
• January 13, 2020

Repatha (evolocumab) "After taking Repataha for 17 months I quit because of severe flu like symptoms for days after each shot. I had another heart attack resulting in more stents, kept taking Repatha my hip flexors were so painful I had to hobble around for months after stopping drug. I was told if I didn't take it I would die but no way can I tolerate Repatha or statins. I guess I am waiting for the next new drug."

• LJP
• November 19, 2019

Repatha (evolocumab) "Right now, and for over 2 months, my quality of life has finished. Fever, extreme nasopharyngeal, ... see 4 specialist from allergy, PUds, ENT and Gastroscope! CT scans, blood tests, extreme fatigue, chills, fever over 101, constant visits to IM. He is baffled. Repatha drug is pure poison, should be black boxed. My life is now awful. Flu like symptoms for 2 month , extreme cough, laryngitis, neck pain, diarrhea blow outs, Horrible. Do not use this. The symptoms started slowly.... after 3 months I was in a debilitating condition from repatha."

• DNF
• Taken for 2 to 5 years
• June 3, 2019

Repatha (evolocumab) "I have had high cholesterol all my life. Same as mother and grandmother. Went on statins in my mid-30s. Started taking Repatha about three years ago. One injection every two weeks. My numbers came down greatly. I get my blood taken every three months or so. Lately I have been having muscle twitching and cramping, mainly in my legs. I also feel that I have a type of anxiety, mainly feeling that in my upper body. I am getting a little forgetful as well. I am 58 years old and I exercise regularly. I also take a baby aspirin and 5 mg of lisinopril for blood pressure. I would like to hear from anyone out there that has similar side effects and any remedies?"

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

Repatha (evolocumab) "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 over night.) Stopped taking and hope side effects go away."

• Willi...
• Taken for 2 to 5 years
• August 21, 2022

Repatha (evolocumab) "I've been on every statin including zetia. The statins did not lower my high cholesterol which was combined in the 300’s and the zetia helped but made me very dizzy so my cardio suggested repatha. I had no issues the first year except sinus issues. But then came the high blood sugar - (Im 5’4 113 and over exerciser). But the big one which has now destroyed my life is the low back pain. This isn't the normal arthritic pain, this occurs 3-5 days after the injection and literally I can't walk, sit, get out of bed, go to the bathroom, walk my dog, drive. Nothing helps to relieve it because it isn't related to an injury or inflammation. That is why I take the drug once a month instead of prescribed. I know I will be incapacitated. My cardio tells me it is all in my head because his wife is on it and she has no side effects. Yes it has brought my cholestrol down to 250. But I don't know how much of this pain I can endure."

• Bette...
• Taken for 2 to 5 years
• August 24, 2020

Repatha (evolocumab) "Repatha has been life altering for me. Terrible genetic predisposition to high LDL and had angioplasty at 44. Total plaque machine. Been on statins, ezetimibe etc forever. Couldn't get my LDL below 130 (on Crestor and Zetia), which basically means I'd be Super high risk by 65 with clogged carotids, early onset Alzheimer's and strokes. Repatha has my LDL at <10. I've been on for 3 years and will be on Repatha or Praluent for the rest of my life, which I figure to have a better chance to much better and longer. I get mild cold symptoms for a short time after dosage, but nothing else. Test results have been superb, though I have not gone for measurements to see if my atherosclerosis is improving...which at near zero LDL it should be."

• TKS
• Taken for 2 to 5 years
• February 15, 2020

Repatha (evolocumab) "I was seriously surprised to see all of these horrific reviews for Repatha. I've been on it for two years and have had zero side effects after the first two weeks when I kind of sort of maybe had mild cold symptoms. I believe that was likely psychosomatic from reading the warnings that came with my first dose. I haven't been sick once, that I can recall, in the last two years nor had any aches and pains. Sadly, maxed out on statins along with Repatha and a vegan diet void of any dietary cholesterol, my total cholesterol is still over 200 and my HDL is only 38. I have a wicked case of FH that refuses to be beaten into submission. My total cholesterol was over 500 on a vegan diet with no meds to give you reference of how much meds have helped me. Repatha lowers my cholesterol slightly more than statins alone, so I plan to keep taking it as long as my co-pay card keeps my expenses low."

• Sundace
• March 9, 2016

Repatha (evolocumab) "My total cholesterol was at 190 taking 80mg of Lipitor, also LDL-P level was at 1600 among other extremely high levels of sub-cholesterol levels. Since taking Repatha 140mg injections once every two weeks my numbers have tanked! Now total cholesterol is at 99 my LDL-P is at 538! and triglycerides at 80. No side effects other then a runny nose for a few hours after my first injection. I hope they find out it lowers the heart attack rate and stroke rate. What a miracle drug so far!"

• Mikec...
• Taken for 1 to 6 months
• September 5, 2018

Repatha (evolocumab) "Started injecting Repatha 4 months ago. Got IBS and now appear to be gluten intolerant. Don’t know if It’s a coincidence or linked to the medication. Feels like flu symptoms without the runny nose most of the time. Ache so much after going to the gym."

• Chris...
• January 29, 2024

Repatha (evolocumab) "The Repatha is working really well. I saw a significant decrease in my LDL with the first 3 injections. I do have minimal side effects such as runny nose and some dizziness. My husband usually does the injection but I have had to do it myself as well. It is very easy and only slight discomfort."

• Mickey
• Taken for less than 1 month
• March 10, 2018

Repatha (evolocumab) "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."

• Andy
• Taken for 2 to 5 years
• March 12, 2021

Repatha (evolocumab) "After reading all of the comments this medicine seems to either come straight from the fiery pits of an evil place or a sunbeam from heaven. I have tried every medication available and started Repatha 3 years ago. Levels are awesome and absolutely no side effects whatsoever!"

• tenni...
• Taken for 6 months to 1 year
• February 5, 2017

Repatha (evolocumab) "High Cholesterol (425 total) for all adult life-diagnosed at 35, went thru every LDL lowering drug as they were new to market. Some lowered as much as 100 points, numbers still very high. Triple Bypass surgery exactly 2 years ago, cardiologist started me on Repatha when it was released 1 year ago. The first 3 months I was battled flu and colds. It seemed my immunity was lowered. I was very run down and started on B12 and Vitamin C. I tried to resume a somewhat active life this past summer and became exhausted very quickly. Still working on building strength and staying healthy! Tests show Total Cholesterol at 165 (!) Wow. Thankful for Repatha , my supportive family & amazing results!"

• Cee
• Taken for 1 to 6 months
• June 9, 2020

Repatha (evolocumab) "With diet, Zetia, and Pravastatin my LDL is the lowest that it has ever been. It works great. I do have minor side effects but they are tolerable for these results. I have heart disease that started before I was medicated and so far, no heart attacks."

• Gabby
• Taken for 1 to 6 months
• November 26, 2018

Repatha (evolocumab) "I started taking Repatha in September 2018 due to high cholesterol numbers and have had no significant problems. To give you an idea of how well this medicine has worked for me my total cholesterol when I started was 309 and just 2 months later it’s 101. Couldn’t be happier with the results."

• Big...
• Taken for 1 to 6 months
• January 23, 2019

Repatha (evolocumab) "I am a 68 year old male with high LDL's. I'm on my 6th dose. I have gone from every two weeks to one dose per month. My first 3 doses brought blurry vision and lung issues. These symptoms have subsided to zero. My LDL's have dropped from the high 100's down to 44. I will continue on 1 dose per month and check my blood monthly. If I can get this drug to continually work for me to keep my blood numbers in order I will be happy. I have never had numbers in the green before. Big Moe"

• New...
• Taken for less than 1 month
• March 9, 2022

Repatha (evolocumab) "62YO male. No history of cardiac issues. Cholesterol/triglycerides elevated (above 200). Currently taking 25mg Pravastatin. First injection of Repatha. Minimal discomfort from injection. On third day following injection began to experience difficulty swallowing, increased mucus production, EXTREME 'night sweats', significant breathing issues during sleep (waking 3-4 times during night), significant chest pain (around right pectoral muscle). Blood pressure elevated (150/100). Breathing issues worsened but only occurred during sleep. Immediately discontinued Prevastatin. Breathing issues abated and swallowing improved. Night sweats stopped. Chest pains continuing."

• Anonymous
• July 17, 2023

Repatha (evolocumab) "Started Repatha in January with no side effects whatsoever. I was able to bring down my cholesterol levels to a manageable level. However, in June, I developed severe muscle cramping and twitching throughout my body. My primary doctor believed it was a result of high creatinine levels due to Repatha medication. I stopped taking the medication but still have symptoms a month later. Not sure when they will subside."

• skf
• Taken for 1 to 6 months
• July 22, 2023

Repatha (evolocumab) "Initially, I was nervous because the reviews were not all positive. But... I started my every 2-week program and to my surprise, I had only 1 reaction. It seemed to drop my blood pressure, and I was quite dizzy initially. I am on 2 types of BP medicine, so I tweaked my diuretic a little and my blood pressure became normal. Other than that, I would not even know I was taking it. I look forward to seeing what my blood tests show in October. I am thinking a very positive outcome. Stay tuned!"

• Mimi
• July 26, 2021

Repatha (evolocumab) "I was considering stopping Repatha because the pain of the injections were horrible! I dreaded the day I had to give the injection. If you warm the Injection up, the shot was not supposed to cause as much pain. Researching information on Repatha, I found one gem that no one had told me Repatha can be left out up to 30 days! I left my injection out overnight and put it under my arm just before I took the shot. Hallelujah"

• Andy
• Taken for 2 to 5 years
• July 18, 2023

Repatha (evolocumab) "Had very few side effects, some aches though I do a manual job daily. Reduced from 6.8 to 2.8 with no statins as totally allergic to all forms of statins. Aged 62, slightly overweight at 6 ft. 1. Get odd bruises at injection point in belly, only legs fine. I do cycle a lot though."