@dee53
I know that this site does not allow links, but I can tell you the name of the studies that I read. There were several, as one lead to another in my search to find out if Repatha was causing my problems and if there were others with the same side effects as myself. My doctor looked up the side effects in the PDR, but of course, Amgen (producers of Repatha) were not listing many of my side effects in the PDR, although some were listed. This is why I felt like I had to do my own research to find out the cause of the significant debilitation that I was enduring. By this time, I was pretty sure that Repatha was causing my problems.
The first thing that I did was type in Severe side effects from Repatha and went from there. I was looking for medical research from well respected sources that showed any sign of the correlation of my symptoms and Repatha.
I found four articles and abstracts that were pertinent to me.
This is what I found:
From AJMC Article January 5, 2023 EXPERTS ISSUE CAUTION FOR EVOLOCUMAB FOLLOWING NEW REVIEW OF FOURIER DATA: AMGEN DISPUTES THE CLAIMS Author: Maggie L Shaw
This noted that the investigators writing in MBJ Open call for "a complete restoration of FOURIER trial data."
This article was eye opening. Once I finished reading the article, I went back and I clicked the link in this article on page 2 where is says:Publishing their findings just last week in BMJ Open.
That lead me to an article named BMJ Open : RESTORING MORTALITY DATE IN THE FOURIER CARDIOVASCULAR OUTCOMES TRIAL OF EVOLOCUMAB IN PATIENTS WITH CARDIOVASCULAR DISEASE; A REANALYSIS BASED ON REGULATORY DATA.
Both of the upper articles were found in the AMJC site.
I then started researching other articles listing sides effects from Repatha and listed my symptoms. I also typed in my symptoms to see if I could find articles on causes or diagnosis of the type of symptoms that I was having. I found two other articles that lead me back to Repatha. There was enough evidence in my opinion to insist on being taken off the drug. I wish that I had found these articles when I was researching in 2020 prior to starting the drug, but since I had no symptoms, and was in good health other than high cholesterol, I really doubt that I would have found anything. Everything that I typed up in 2020 to do my due diligence prior to starting the drug was showing minimal side effects.
However, after researching in 2024 , I found enough evidence in my opinion to insist being taken off Repatha. I have continued my research throughout 2025 in trying to deal with the lasting side effects from this drug. I have since found that there are others with the same debilitating side effects that I have. I went to sources that had international sharing between medical professionals. These had to do with BMJ Open as well.
These two articles are:
Journal of Neurological Research by Elmer Press
Case Report Volume 9 Number 4-5 October 2019 Pages 72-74
CASE REPORT: J NEUROL RES. 2019;9(4-5):72-74
CHRONIC INFLAMMATORY DEMYELINATING POLYRADICULONEUROPATHERY ASSOCIATION WITH LOW CHOLESTEROL LEVELS: A CASE REPORT IN A PATIENT TAKING PCSK9 INHIBITOR
Diana Carolina France, Neelam Neupane, Maria Riaz, Sanaz Mohammadzadeh, Issac Sachmechi
This manuscript was submitted September 3, 1019 and accepted September 28, 2019
Department of Internal Medicine, Endocrinology Services, Icahn School of Medicine at Mount Sinai, Queens Hospital Center, Jamaica, NY 11432, USA Corresponding Author: Diane Carolina Franco and Neelam Neupane, Department of Internal Medicine, Endocrinology Services, Icahn School of Medicine at Mount Sinai, Queens Hospital Center, Jamaica, NY 11432, USA
(There are two emails attached to those two people listed above, but not sure if I am allowed to put their emails. It will show on the article.)
All authors showing on this article are Diana Carolina Franco, Neelam Neupane, Maria Riaz, San Mohammadzadeh, Issac Sachmechi
The other article that I found was by BMC Open Access
The name of the article is CASUAL RELATIONSHIP BETWEEN PCSK9 INHIBITOR AND AUTOIMMUNE DISEASES: A DRUG TARGET MENDELIAN RANDOMIZATION STUDY
By Weijia Die, Jiaxin Li, Hao Du and Jian Xia
I found it under Arthritis Research & Therapy (2023) 25:148
It was the same site that I found the other article where medical research is being shared by medical professionals.
There is a lot of heavy reading in these four articles and abstracts, but I was willing to wade through it because I was so desperate to figure out what was going on with me. I was in such a physical downward spiral at the time, and knew that if I did not figure out what was causing my medical problems and put a stop to it, that it was only going to get worse. I found my answers and am working towards regaining my health. Even though I have a long way to go, I have made significant improvements since being off Repatha. It has been 13 months since I discontinued this drug.
Like I said before, my Rheumatologist said it could take years to recover from the damage that Repatha caused me. I just happen to be one of the unlucky ones concerning this drug. I know everyone taking this drug do not have all of the symptoms as I have experienced... but I do know that since being off this drug many of my symptoms are gone and my current medical problems are directly related to this drug.
It is my hope that if others are having the same symptoms as myself, they don't have to go through what I did, and will be able to recognize the Repatha link sooner. It took a lot of time to figure out that it was Repatha causing my debilitation, and it took my own personal research to convince my endocrinologist to stop the drug on me and look for other avenues to control my high cholesterol. (I have Familial Hypercholesterolemia. I lead a very healthy lifestyle, so it showed up later in life for me, rather than earlier.)
I am thankful that my primary doctor sent me to multiple specialists to figure out what was going on. He listened to me and cared enough to help me figure out what was happening to me. It has been over a year of tests, treatments and research to finally get the answers that I was looking for.
If you find any other articles other than these in your own search, I would appreciate you letting me know.
@rhondaj
Thank you for the information! Thank you for sharing your experience and expertise you’ve gained in the most difficult way. I am hopeful right along with you that others that will have side effects of Repatha do not have to go through what you are, and yes….are able to recognize it sooner. It’s a sneaky drug.
@dee53
I know that this site does not allow links, but I can tell you the name of the studies that I read. There were several, as one lead to another in my search to find out if Repatha was causing my problems and if there were others with the same side effects as myself. My doctor looked up the side effects in the PDR, but of course, Amgen (producers of Repatha) were not listing many of my side effects in the PDR, although some were listed. This is why I felt like I had to do my own research to find out the cause of the significant debilitation that I was enduring. By this time, I was pretty sure that Repatha was causing my problems.
The first thing that I did was type in Severe side effects from Repatha and went from there. I was looking for medical research from well respected sources that showed any sign of the correlation of my symptoms and Repatha.
I found four articles and abstracts that were pertinent to me.
This is what I found:
From AJMC Article January 5, 2023 EXPERTS ISSUE CAUTION FOR EVOLOCUMAB FOLLOWING NEW REVIEW OF FOURIER DATA: AMGEN DISPUTES THE CLAIMS Author: Maggie L Shaw
This noted that the investigators writing in MBJ Open call for "a complete restoration of FOURIER trial data."
This article was eye opening. Once I finished reading the article, I went back and I clicked the link in this article on page 2 where is says:Publishing their findings just last week in BMJ Open.
That lead me to an article named BMJ Open : RESTORING MORTALITY DATE IN THE FOURIER CARDIOVASCULAR OUTCOMES TRIAL OF EVOLOCUMAB IN PATIENTS WITH CARDIOVASCULAR DISEASE; A REANALYSIS BASED ON REGULATORY DATA.
Both of the upper articles were found in the AMJC site.
I then started researching other articles listing sides effects from Repatha and listed my symptoms. I also typed in my symptoms to see if I could find articles on causes or diagnosis of the type of symptoms that I was having. I found two other articles that lead me back to Repatha. There was enough evidence in my opinion to insist on being taken off the drug. I wish that I had found these articles when I was researching in 2020 prior to starting the drug, but since I had no symptoms, and was in good health other than high cholesterol, I really doubt that I would have found anything. Everything that I typed up in 2020 to do my due diligence prior to starting the drug was showing minimal side effects.
However, after researching in 2024 , I found enough evidence in my opinion to insist being taken off Repatha. I have continued my research throughout 2025 in trying to deal with the lasting side effects from this drug. I have since found that there are others with the same debilitating side effects that I have. I went to sources that had international sharing between medical professionals. These had to do with BMJ Open as well.
These two articles are:
Journal of Neurological Research by Elmer Press
Case Report Volume 9 Number 4-5 October 2019 Pages 72-74
CASE REPORT: J NEUROL RES. 2019;9(4-5):72-74
CHRONIC INFLAMMATORY DEMYELINATING POLYRADICULONEUROPATHERY ASSOCIATION WITH LOW CHOLESTEROL LEVELS: A CASE REPORT IN A PATIENT TAKING PCSK9 INHIBITOR
Diana Carolina France, Neelam Neupane, Maria Riaz, Sanaz Mohammadzadeh, Issac Sachmechi
This manuscript was submitted September 3, 1019 and accepted September 28, 2019
Department of Internal Medicine, Endocrinology Services, Icahn School of Medicine at Mount Sinai, Queens Hospital Center, Jamaica, NY 11432, USA Corresponding Author: Diane Carolina Franco and Neelam Neupane, Department of Internal Medicine, Endocrinology Services, Icahn School of Medicine at Mount Sinai, Queens Hospital Center, Jamaica, NY 11432, USA
(There are two emails attached to those two people listed above, but not sure if I am allowed to put their emails. It will show on the article.)
All authors showing on this article are Diana Carolina Franco, Neelam Neupane, Maria Riaz, San Mohammadzadeh, Issac Sachmechi
The other article that I found was by BMC Open Access
The name of the article is CASUAL RELATIONSHIP BETWEEN PCSK9 INHIBITOR AND AUTOIMMUNE DISEASES: A DRUG TARGET MENDELIAN RANDOMIZATION STUDY
By Weijia Die, Jiaxin Li, Hao Du and Jian Xia
I found it under Arthritis Research & Therapy (2023) 25:148
It was the same site that I found the other article where medical research is being shared by medical professionals.
There is a lot of heavy reading in these four articles and abstracts, but I was willing to wade through it because I was so desperate to figure out what was going on with me. I was in such a physical downward spiral at the time, and knew that if I did not figure out what was causing my medical problems and put a stop to it, that it was only going to get worse. I found my answers and am working towards regaining my health. Even though I have a long way to go, I have made significant improvements since being off Repatha. It has been 13 months since I discontinued this drug.
Like I said before, my Rheumatologist said it could take years to recover from the damage that Repatha caused me. I just happen to be one of the unlucky ones concerning this drug. I know everyone taking this drug do not have all of the symptoms as I have experienced... but I do know that since being off this drug many of my symptoms are gone and my current medical problems are directly related to this drug.
It is my hope that if others are having the same symptoms as myself, they don't have to go through what I did, and will be able to recognize the Repatha link sooner. It took a lot of time to figure out that it was Repatha causing my debilitation, and it took my own personal research to convince my endocrinologist to stop the drug on me and look for other avenues to control my high cholesterol. (I have Familial Hypercholesterolemia. I lead a very healthy lifestyle, so it showed up later in life for me, rather than earlier.)
I am thankful that my primary doctor sent me to multiple specialists to figure out what was going on. He listened to me and cared enough to help me figure out what was happening to me. It has been over a year of tests, treatments and research to finally get the answers that I was looking for.
If you find any other articles other than these in your own search, I would appreciate you letting me know.
I just found this thread and am thankful for all the comments. I have just completed my third injection of Repatha. I had a lot of trouble with muscle pain on two different statins as well as fatigue. So, I started to notice that I have been feeling depressed for no apparent reason. I also have increasing leg pain in my right leg between my knee and ankle which exactly feels like it did on statins. A little light headiness, increasing right shoulder pain, and get up in the morning just feeling off. I do have high ldl and a history of heart disease in my family. Had a heart cath done six weeks ago and although I do have heart disease there were no stents put in and no real serious obstructions. The depression worries me as it is totally unlike me. I started crying on the phone to my husband telling him I thought I really needed to get off Repatha but the doctors have me so scared of heart disease that I don't know what to do. This is totally atypical behavior for me! I am 75, very active, eat healthy, am not overweight, and love my life ( with the exception of this recent anxiety and depression.) I don't want to go down this road with Repatha and ruin the rest of my life with the side effects as I'm not too far along with this medication. Have I given it enough time? Will my body adjust? Has anyone tried anything else after statins and Repatha that worked without terrible side effects? I feel fortunate to find a group that is speaking about this as there doesn't seem to be too much out there about real life consequences from this drug.
I was wondering if anyone has had coughing and breathing issues. I felt great all summer. I visited my cardiologist in August and he prescribed Repatha because my ldl was a little higher than usual. About a week after my first injection I developed a cough. I thought it was allergies. After about my third injection I started to get concerned because I was starting to have breathing problems. I called my doctor cardilogist about it because I wanted to make sure it wasn't a heart related issue, because I have a history of heart problems. He had me take a blood test among other tests and didn't seem to think it was heart related. He sent me to a pulmonologist which I'm still seeing and getting testing. I even called Amgen who makes Repatha and the woman on the phone was not at all helpful. She insisted that cough wasn't a side effect until I told her wherr it was listed on their website, then she said it was only in 4.5% of patients. I just want to know if anyone else experienced this and if it stops after stopping Repatha.
I just found this thread and am thankful for all the comments. I have just completed my third injection of Repatha. I had a lot of trouble with muscle pain on two different statins as well as fatigue. So, I started to notice that I have been feeling depressed for no apparent reason. I also have increasing leg pain in my right leg between my knee and ankle which exactly feels like it did on statins. A little light headiness, increasing right shoulder pain, and get up in the morning just feeling off. I do have high ldl and a history of heart disease in my family. Had a heart cath done six weeks ago and although I do have heart disease there were no stents put in and no real serious obstructions. The depression worries me as it is totally unlike me. I started crying on the phone to my husband telling him I thought I really needed to get off Repatha but the doctors have me so scared of heart disease that I don't know what to do. This is totally atypical behavior for me! I am 75, very active, eat healthy, am not overweight, and love my life ( with the exception of this recent anxiety and depression.) I don't want to go down this road with Repatha and ruin the rest of my life with the side effects as I'm not too far along with this medication. Have I given it enough time? Will my body adjust? Has anyone tried anything else after statins and Repatha that worked without terrible side effects? I feel fortunate to find a group that is speaking about this as there doesn't seem to be too much out there about real life consequences from this drug.
@martspir
I decided it is time for me to give back. I have found the information on the Repatha threads very helpful because as you say, there is not much out there. I recently ( a month ago) stopped Repatha due to pain in my hands which made it hard to hold things among other issues. I had been on Repatha for 10 months, and the hand pain started with the last 2 injections. Prior to that I had developed leg and back pain, and was going to PT which wasn't helping. I am a very active and athletic 70+ year old, normal weight, mostly vegan. I am also now realizing that I was depressed on the Repatha. So after being off for a month, the depression is gone, the hands are slowly becoming less painful and the back pain is slowly dissipating. I hope all the pain goes away, they say it takes 2 or 3 months to get out of one's system. Also, I am looking for an alternative, I have had body pain on several statins which led to the Repatha. I have a high Lipoprotein a level and LDL issues which are genetic.
I was wondering if anyone has had coughing and breathing issues. I felt great all summer. I visited my cardiologist in August and he prescribed Repatha because my ldl was a little higher than usual. About a week after my first injection I developed a cough. I thought it was allergies. After about my third injection I started to get concerned because I was starting to have breathing problems. I called my doctor cardilogist about it because I wanted to make sure it wasn't a heart related issue, because I have a history of heart problems. He had me take a blood test among other tests and didn't seem to think it was heart related. He sent me to a pulmonologist which I'm still seeing and getting testing. I even called Amgen who makes Repatha and the woman on the phone was not at all helpful. She insisted that cough wasn't a side effect until I told her wherr it was listed on their website, then she said it was only in 4.5% of patients. I just want to know if anyone else experienced this and if it stops after stopping Repatha.
@jrm78 My cough began with my 1st Repatha injection. With the second injection the post nasal drip and cough were thick and incessant. For 3 weeks, I felt as bad as I'd ever felt with a cold/flu. Cold and flu meds barely helped. My sleep was severely affected and the coughing was so severe I felt like I might vomit on numerous occasions. I needed numerous Poise pad changes per day. It was miserable. Quality of life severely impacted. Stopped Repatha but insurance has yet to approve my PCP's prescription of Bempedoic Acid. I was fortunate to tolerate statins for 15 years before muscle and joint pain became severe and caused me to limp on the right side as I could no longer bear full wt. My LDL was 182 last checked. I feel great off of these meds. Had cardiac cath in 2019 which was clear. No personal cardiac history but family history. Genetic HBP well controlled. I'm an active 67 yr old. Love being able to garden, hike, yoga, do yard work, and take care of my 4 grandchildren with joy when needed. I'm so afraid to try another medication......when and if insurance allows! It's a conundrum.
I just found this thread and am thankful for all the comments. I have just completed my third injection of Repatha. I had a lot of trouble with muscle pain on two different statins as well as fatigue. So, I started to notice that I have been feeling depressed for no apparent reason. I also have increasing leg pain in my right leg between my knee and ankle which exactly feels like it did on statins. A little light headiness, increasing right shoulder pain, and get up in the morning just feeling off. I do have high ldl and a history of heart disease in my family. Had a heart cath done six weeks ago and although I do have heart disease there were no stents put in and no real serious obstructions. The depression worries me as it is totally unlike me. I started crying on the phone to my husband telling him I thought I really needed to get off Repatha but the doctors have me so scared of heart disease that I don't know what to do. This is totally atypical behavior for me! I am 75, very active, eat healthy, am not overweight, and love my life ( with the exception of this recent anxiety and depression.) I don't want to go down this road with Repatha and ruin the rest of my life with the side effects as I'm not too far along with this medication. Have I given it enough time? Will my body adjust? Has anyone tried anything else after statins and Repatha that worked without terrible side effects? I feel fortunate to find a group that is speaking about this as there doesn't seem to be too much out there about real life consequences from this drug.
Good to hear your input. I would call Repatha « insidious ». Its effects are not direct, obvious, clear, but with careful record keeping of the details, times of shots and times and descriptions of symptoms, it is possible to figure out what is caused by the drug and what other causes. Repatha’s very long half-life must be considered in figuring things out. It hangs around in your body for a very long time. I sometimes wonder whether its effects are over even now for me. My final shot was in May of 2025.
I am going to try Inclisinan, aka Leqvio next. Medicare wouldnot pay for Leqvio until I had tried Repatha first. I wonder how many patients die of Repatha without trying the more expensive med? I certainly had near misses in the many falls I took, I now understand, were caused by Repatha. The falls have stopped completely now that I have detoxed from Repatha.
@bmcel
First two years:
Constant unexplained UTI's - some were rare forms
Constant Back, Leg and Hip Pain
I did not realize it was from Repatha
Third and Fourth Years:
By the fourth year, these symptoms increased tremendously.
1. Pulling strain on back thighs and inside of thighs- pain level about a 6, some days higher. 2024
2. Severe joint inflammation to the point that I would walk like a penguin the first 15-20 minutes after I woke in the morning. I would limp the rest of the day.
Severe inflammation to the point of not being able to walk properly.
3. Left foot dragging by 4th year 2024
4. Falling all of the time and inability to get up. My legs would not support myself. Unable to squat or stand back up. This was gradual in 2023 and increased significantly in 2024 (Completely gone now.)
5. Intermittent and severe edema in the abdomen, groin and legs. I cannot sit for very long, travel in a car for long periods or be on my feet for long periods of time. Flying is out of the question, as it remained severe for 2 months after the flight.
I am incapable of doing yoga now. Most of the hobbies that I had, I can no longer do. I have started to barely be able to knit for short periods of time. I used to knit every day for about 30-60 minutes. I am lucky if I last 10 minutes twice a week. I can't hold a paint brush very well anymore, so have not tried to paint. I can no longer work with epoxy. Most all of my creative hobbies have been stripped from my life. I try to use my exercise bike, but sometimes it causes edema. Swimming seems to be the one thing that I can do with no repercussions. I type much slower now and text slower with more mistakes, but I can at least do it now. I have difficulty opening jars, cleaning and cooking are harder to do, but I can do some for short periods of time. I used to be able to go non-stop for hours and hours, so it is significant damage.
6. Tendon in foot snapped for no reason - July 2023
7. Inability to step up, bend down or get up off of the floor. 2024
Severe Exhaustion 2023 and 2024
Some inflammation in arms and hands as well. - was severe, but has decreased in severity since being off the drug.
Symptoms of Rheumatoid Arthritis- which my Rheumatologist has confirmed that I do not have and it is long term damage from Repatha
I fell about a week or so after the doctor agreed to take me off the Repatha. I broke my hand, but it was the fingers on both hands that stopped working. I kept telling the doctor that the break does not even hurt. I went to therapy for over 6 months. Left hand is much better, but the strength of my hand has significantly reduced since the injury. Right hand has loss of use for most things for three fingers and some with the other two. It took over three months just to dress myself. I have significant decrease in strength in my right and left hand, but particularly my dominant hand. Physical therapist could not figure it out, because I was doing my hand exercises daily. That is when my doctor sent me to a rheumatologist...my inflammation markers go up and down.
I still have inflammation, but it has decreased over the 13 month period. Tests show that I have significant vascular insufficiency in both legs. I am sure this is from Repatha, as I was strong as a bull and very active prior to being on this drug. I did yoga, and could physically do most anything that a forty year old could. I had zero symptoms of any kind prior to being on this drug. My stamina level in my early sixties was like someone in their forties. By my third year on the drug I felt like I had aged thirty or forty years.
The third and fourth years were the years that I thought I was aging fast. I was not... it was from the Repatha. Since being off the drug, I my inflammation is going down but I still have issues with my legs and groin area filling up and loss of mobility in my hands. I have been told that it may take years for my body to recover from the damage that Repatha caused.
Good to hear your input. I would call Repatha « insidious ». Its effects are not direct, obvious, clear, but with careful record keeping of the details, times of shots and times and descriptions of symptoms, it is possible to figure out what is caused by the drug and what other causes. Repatha’s very long half-life must be considered in figuring things out. It hangs around in your body for a very long time. I sometimes wonder whether its effects are over even now for me. My final shot was in May of 2025.
I am going to try Inclisinan, aka Leqvio next. Medicare wouldnot pay for Leqvio until I had tried Repatha first. I wonder how many patients die of Repatha without trying the more expensive med? I certainly had near misses in the many falls I took, I now understand, were caused by Repatha. The falls have stopped completely now that I have detoxed from Repatha.
@tatiana987 Thanks for your input. I did actually feel some minor dizziness. I will look into Inclisinan but quite honestly, I'm having some real reservations about these cholesterol lowering drugs.
@martspir
I decided it is time for me to give back. I have found the information on the Repatha threads very helpful because as you say, there is not much out there. I recently ( a month ago) stopped Repatha due to pain in my hands which made it hard to hold things among other issues. I had been on Repatha for 10 months, and the hand pain started with the last 2 injections. Prior to that I had developed leg and back pain, and was going to PT which wasn't helping. I am a very active and athletic 70+ year old, normal weight, mostly vegan. I am also now realizing that I was depressed on the Repatha. So after being off for a month, the depression is gone, the hands are slowly becoming less painful and the back pain is slowly dissipating. I hope all the pain goes away, they say it takes 2 or 3 months to get out of one's system. Also, I am looking for an alternative, I have had body pain on several statins which led to the Repatha. I have a high Lipoprotein a level and LDL issues which are genetic.
@backhand Thanks for your response. I also have high ldl but no other markers. Low blood pressure, good hdl, triglycerides etc. I had a heart catheter procedure but the doctor said I did not need stents but did have some heart disease. So apparently, I'm not blocked enough to put them in. Since I am 76 and otherwise healthy I ask myself if the quality of life verses these cholesterol lowering drugs is worth continuing medication. I've decided to go to functional medicine doctor for ,perhaps, see if there is another path. I do believe the ldl is hereditary as heart disease runs in my family but so far I just don't seem to do well with these drugs.
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@rhondaj
Thank you for the information! Thank you for sharing your experience and expertise you’ve gained in the most difficult way. I am hopeful right along with you that others that will have side effects of Repatha do not have to go through what you are, and yes….are able to recognize it sooner. It’s a sneaky drug.
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What were your principal side effects from repatha
I just found this thread and am thankful for all the comments. I have just completed my third injection of Repatha. I had a lot of trouble with muscle pain on two different statins as well as fatigue. So, I started to notice that I have been feeling depressed for no apparent reason. I also have increasing leg pain in my right leg between my knee and ankle which exactly feels like it did on statins. A little light headiness, increasing right shoulder pain, and get up in the morning just feeling off. I do have high ldl and a history of heart disease in my family. Had a heart cath done six weeks ago and although I do have heart disease there were no stents put in and no real serious obstructions. The depression worries me as it is totally unlike me. I started crying on the phone to my husband telling him I thought I really needed to get off Repatha but the doctors have me so scared of heart disease that I don't know what to do. This is totally atypical behavior for me! I am 75, very active, eat healthy, am not overweight, and love my life ( with the exception of this recent anxiety and depression.) I don't want to go down this road with Repatha and ruin the rest of my life with the side effects as I'm not too far along with this medication. Have I given it enough time? Will my body adjust? Has anyone tried anything else after statins and Repatha that worked without terrible side effects? I feel fortunate to find a group that is speaking about this as there doesn't seem to be too much out there about real life consequences from this drug.
I was wondering if anyone has had coughing and breathing issues. I felt great all summer. I visited my cardiologist in August and he prescribed Repatha because my ldl was a little higher than usual. About a week after my first injection I developed a cough. I thought it was allergies. After about my third injection I started to get concerned because I was starting to have breathing problems. I called my doctor cardilogist about it because I wanted to make sure it wasn't a heart related issue, because I have a history of heart problems. He had me take a blood test among other tests and didn't seem to think it was heart related. He sent me to a pulmonologist which I'm still seeing and getting testing. I even called Amgen who makes Repatha and the woman on the phone was not at all helpful. She insisted that cough wasn't a side effect until I told her wherr it was listed on their website, then she said it was only in 4.5% of patients. I just want to know if anyone else experienced this and if it stops after stopping Repatha.
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I decided it is time for me to give back. I have found the information on the Repatha threads very helpful because as you say, there is not much out there. I recently ( a month ago) stopped Repatha due to pain in my hands which made it hard to hold things among other issues. I had been on Repatha for 10 months, and the hand pain started with the last 2 injections. Prior to that I had developed leg and back pain, and was going to PT which wasn't helping. I am a very active and athletic 70+ year old, normal weight, mostly vegan. I am also now realizing that I was depressed on the Repatha. So after being off for a month, the depression is gone, the hands are slowly becoming less painful and the back pain is slowly dissipating. I hope all the pain goes away, they say it takes 2 or 3 months to get out of one's system. Also, I am looking for an alternative, I have had body pain on several statins which led to the Repatha. I have a high Lipoprotein a level and LDL issues which are genetic.
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2 Reactions@jrm78 My cough began with my 1st Repatha injection. With the second injection the post nasal drip and cough were thick and incessant. For 3 weeks, I felt as bad as I'd ever felt with a cold/flu. Cold and flu meds barely helped. My sleep was severely affected and the coughing was so severe I felt like I might vomit on numerous occasions. I needed numerous Poise pad changes per day. It was miserable. Quality of life severely impacted. Stopped Repatha but insurance has yet to approve my PCP's prescription of Bempedoic Acid. I was fortunate to tolerate statins for 15 years before muscle and joint pain became severe and caused me to limp on the right side as I could no longer bear full wt. My LDL was 182 last checked. I feel great off of these meds. Had cardiac cath in 2019 which was clear. No personal cardiac history but family history. Genetic HBP well controlled. I'm an active 67 yr old. Love being able to garden, hike, yoga, do yard work, and take care of my 4 grandchildren with joy when needed. I'm so afraid to try another medication......when and if insurance allows! It's a conundrum.
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2 Reactions@martspir
Good to hear your input. I would call Repatha « insidious ». Its effects are not direct, obvious, clear, but with careful record keeping of the details, times of shots and times and descriptions of symptoms, it is possible to figure out what is caused by the drug and what other causes. Repatha’s very long half-life must be considered in figuring things out. It hangs around in your body for a very long time. I sometimes wonder whether its effects are over even now for me. My final shot was in May of 2025.
I am going to try Inclisinan, aka Leqvio next. Medicare wouldnot pay for Leqvio until I had tried Repatha first. I wonder how many patients die of Repatha without trying the more expensive med? I certainly had near misses in the many falls I took, I now understand, were caused by Repatha. The falls have stopped completely now that I have detoxed from Repatha.
Beware of the Repatha dizziness,
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3 Reactions@bmcel
First two years:
Constant unexplained UTI's - some were rare forms
Constant Back, Leg and Hip Pain
I did not realize it was from Repatha
Third and Fourth Years:
By the fourth year, these symptoms increased tremendously.
1. Pulling strain on back thighs and inside of thighs- pain level about a 6, some days higher. 2024
2. Severe joint inflammation to the point that I would walk like a penguin the first 15-20 minutes after I woke in the morning. I would limp the rest of the day.
Severe inflammation to the point of not being able to walk properly.
3. Left foot dragging by 4th year 2024
4. Falling all of the time and inability to get up. My legs would not support myself. Unable to squat or stand back up. This was gradual in 2023 and increased significantly in 2024 (Completely gone now.)
5. Intermittent and severe edema in the abdomen, groin and legs. I cannot sit for very long, travel in a car for long periods or be on my feet for long periods of time. Flying is out of the question, as it remained severe for 2 months after the flight.
I am incapable of doing yoga now. Most of the hobbies that I had, I can no longer do. I have started to barely be able to knit for short periods of time. I used to knit every day for about 30-60 minutes. I am lucky if I last 10 minutes twice a week. I can't hold a paint brush very well anymore, so have not tried to paint. I can no longer work with epoxy. Most all of my creative hobbies have been stripped from my life. I try to use my exercise bike, but sometimes it causes edema. Swimming seems to be the one thing that I can do with no repercussions. I type much slower now and text slower with more mistakes, but I can at least do it now. I have difficulty opening jars, cleaning and cooking are harder to do, but I can do some for short periods of time. I used to be able to go non-stop for hours and hours, so it is significant damage.
6. Tendon in foot snapped for no reason - July 2023
7. Inability to step up, bend down or get up off of the floor. 2024
Severe Exhaustion 2023 and 2024
Some inflammation in arms and hands as well. - was severe, but has decreased in severity since being off the drug.
Symptoms of Rheumatoid Arthritis- which my Rheumatologist has confirmed that I do not have and it is long term damage from Repatha
I fell about a week or so after the doctor agreed to take me off the Repatha. I broke my hand, but it was the fingers on both hands that stopped working. I kept telling the doctor that the break does not even hurt. I went to therapy for over 6 months. Left hand is much better, but the strength of my hand has significantly reduced since the injury. Right hand has loss of use for most things for three fingers and some with the other two. It took over three months just to dress myself. I have significant decrease in strength in my right and left hand, but particularly my dominant hand. Physical therapist could not figure it out, because I was doing my hand exercises daily. That is when my doctor sent me to a rheumatologist...my inflammation markers go up and down.
I still have inflammation, but it has decreased over the 13 month period. Tests show that I have significant vascular insufficiency in both legs. I am sure this is from Repatha, as I was strong as a bull and very active prior to being on this drug. I did yoga, and could physically do most anything that a forty year old could. I had zero symptoms of any kind prior to being on this drug. My stamina level in my early sixties was like someone in their forties. By my third year on the drug I felt like I had aged thirty or forty years.
The third and fourth years were the years that I thought I was aging fast. I was not... it was from the Repatha. Since being off the drug, I my inflammation is going down but I still have issues with my legs and groin area filling up and loss of mobility in my hands. I have been told that it may take years for my body to recover from the damage that Repatha caused.
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4 Reactions@tatiana987 Thanks for your input. I did actually feel some minor dizziness. I will look into Inclisinan but quite honestly, I'm having some real reservations about these cholesterol lowering drugs.
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3 Reactions@backhand Thanks for your response. I also have high ldl but no other markers. Low blood pressure, good hdl, triglycerides etc. I had a heart catheter procedure but the doctor said I did not need stents but did have some heart disease. So apparently, I'm not blocked enough to put them in. Since I am 76 and otherwise healthy I ask myself if the quality of life verses these cholesterol lowering drugs is worth continuing medication. I've decided to go to functional medicine doctor for ,perhaps, see if there is another path. I do believe the ldl is hereditary as heart disease runs in my family but so far I just don't seem to do well with these drugs.
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4 Reactions