@rhondaj At this stage, many years after the MS diagnosis, I have no clue what symptoms are caused by MS and what by something else or a combination of factors. The best I can tell MS has no pattern, no usual présentation. The only thing that has been the same or even predictable over the years is the brain lesions that show on images. Symptoms come and go and make little or no sense. Doctors are of little help and sometimes do damage unintentiinally. Repatha changed my sugar tolerance, but is that permanent? I have no clue.
The new Repatha-related sugar intolerance clearly causes symptoms that medical folks have called nerve damage, as if it were from MS, nerve sheath destruction. If I eat a fairly normal amount of sugar (like one cookie), my hands or my legs tingle within an hour or less. Consistent tingling from sugar consumption. What causes what is confusing.
I am quite certain that Reptha was dangerous for me because of the many falls clearly associated with taking the shots. After detox from Repatha, I think the dizziness and falling are completely gone, but the sugar intolerance lingers. The sugar problem shows up in blood work but only slightly and over a long period of time. Diabetes? I doubt it. Pre-diabetes? Who knows?
@tatiana987, it is good to hear your dizziness and falling are gone. This has to be a tremendous relief!
I agree, it is difficult to sort through what causes what when various problems can cause so many overlapping symptoms. For whatever reason my body requires a pretty strict and consistent diet. Part of this is sugar. I do ok with it when I have other things with it but I learned to never consume it by itself.
You mention MS. Are you able to tell if anything else has changed with your digestion? What do you typically eat?
@jlharsh
Hi Janell,
I have an update on all of my symptoms. It has been a year long process to discover how to recover from the damage that Repatha caused. I still do not have full use of my dominant hand. I understand that it could take years to undo the damage that Repatha caused, so am moving forward with life at a limited capacity and pray that my body can heal from the damage.
However, after my doctors proceeded with every test available, they finally discovered what other damage occurred after taking this drug. Being that I had the physical ability of someone in their forties while in my sixties prior to using Repatha, I have had significant damage. I still have trouble doing simple things with my hands, and my strength has decreased by about 75%.
They have now discovered that I have venous insufficiency in both legs. My heart is fine. I have significant insufficiency in my left mid thigh and knee segments and significant insufficiency in my right mid calf segments, knee and throughout the thigh segments. I am sure this was caused by the Repatha as well, as I had nothing wrong with me and zero symptoms prior to being subjected to this drug. The only medical issue that I had was high cholesterol due to hypocholesterolmia before agreeing to go on this drug. Being that this was the only drug that I was on, it is very clear what damage it caused since there is no other drug involved. I am going to have to have a medical procedure to stop the leaks and will have to wear compression stockings for the rest of my life.
I am waiting to get approval for the procedure, but have found that the compression socks have helped with some of my symptoms. I thought that you should know what I found out, since your symptoms are very similar to mine. I had a doppler a year ago but it was to discover if I had clots, which I did not. This final test was a Bilateral Lower Extremity Venous Duplex. It was to check for clots, but more importantly, to check for leakage of the veins.
I am glad that I kept pushing the doctors to keep looking, because I knew something was not right. I have my answer now. If anyone on this thread has had some of the same symptoms as myself, I hope you have your doctors order this test. I would be interested to know how many of us have this same issue now.
Ooh, @rhondaj! You definitely do not sound like you are getting better. I am glad you are making progress pinning down more problems, though. Thank you for letting me know.
I do not specifically recall anyone discussing both taking Repatha and venous insufficiency. I spent time wearing compression socks at one point. One foot had started randomly swelling for a few days at a time and the other ankle had an open sore on it that took months to heal.
You may want to consider creating a new discussion with your new information. Do you think this will help?
@tatiana987, it is good to hear your dizziness and falling are gone. This has to be a tremendous relief!
I agree, it is difficult to sort through what causes what when various problems can cause so many overlapping symptoms. For whatever reason my body requires a pretty strict and consistent diet. Part of this is sugar. I do ok with it when I have other things with it but I learned to never consume it by itself.
You mention MS. Are you able to tell if anything else has changed with your digestion? What do you typically eat?
@jlharsh Thank you for your kind words and your interest.
Yes, there are a few minor issues with digestion that came with the Repatha use. I scheduled an appointment for a colonoscopy, but by the time the appointment was near I was so much better (meaning detoxing) that I cancelled. After that, well I am not 21 years old and my system is far from perfect, but I see nothing dramatic lately. My last Repatha shot was May 21, 2025.
I came to the USA in 2008 and the diet here did not agree with me at all. Too much sugar, too much styrofoam-tasting stuff from boxes, quantities shockingly oversized. In 17 years I have found some solutions, but I have not really adjusted, I get cravings like a pregnant woman and often nothing tastes good to me. I am hungry but food is repulsive often. I guess I like Mexican food and sushi the best of choices here. I have no regular diet, no system. I just try to find good food.
Ooh, @rhondaj! You definitely do not sound like you are getting better. I am glad you are making progress pinning down more problems, though. Thank you for letting me know.
I do not specifically recall anyone discussing both taking Repatha and venous insufficiency. I spent time wearing compression socks at one point. One foot had started randomly swelling for a few days at a time and the other ankle had an open sore on it that took months to heal.
You may want to consider creating a new discussion with your new information. Do you think this will help?
@jlharsh
Hi Janell,
I don't believe that I have a need to start a new discussion, as I am sure that the venous insufficiency was caused from the Repatha. I know the inflammation and inability to use all of my fingers on my right hand are from the Repatha per the Rheumatologist.
The swelling, pain and inflammation were always my main problems after being on the drug for about three years. I would get swelling in my feet and legs the following day after an injection, and then it would subside a bit after about two weeks. Sometimes it would be in my abdominal area as well. Then I would do another injection, and the same thing would happen. After each injection, it seemed to get worse and worse during that last year. Finally, it got so bad that I insisted on getting off the drug.
It took a few months of telling my endocrinologist that something was severely wrong before he agreed for me to go off of it. By that time, my symptoms were having less days of relief between the injections and the inflammation was increased significantly. My left foot was dragging, and my joints were so stiff that I could not bend. That is when I started tripping and falling and all of the other mobility problems started happening.
After being off the drug a year, the swelling and inflammation have gone down significantly. My legs look normal now. I have my mobility back in my joints, and I no longer drag my foot or fall all of the time. It took quite a while for the inflammation to decrease and get to a point where I could figure out where the inflammation was coming from...because at first, it was all over my body.
Once I was able to pinpoint where it was coming from, it gave the doctors more information to work with.
I am healing slowly. I know I am on the right path. My rheumatologist told me that it could take years to undo all of the damage that the Repatha caused. I just have to be patient.
@jlharsh
Hi Janell,
I don't believe that I have a need to start a new discussion, as I am sure that the venous insufficiency was caused from the Repatha. I know the inflammation and inability to use all of my fingers on my right hand are from the Repatha per the Rheumatologist.
The swelling, pain and inflammation were always my main problems after being on the drug for about three years. I would get swelling in my feet and legs the following day after an injection, and then it would subside a bit after about two weeks. Sometimes it would be in my abdominal area as well. Then I would do another injection, and the same thing would happen. After each injection, it seemed to get worse and worse during that last year. Finally, it got so bad that I insisted on getting off the drug.
It took a few months of telling my endocrinologist that something was severely wrong before he agreed for me to go off of it. By that time, my symptoms were having less days of relief between the injections and the inflammation was increased significantly. My left foot was dragging, and my joints were so stiff that I could not bend. That is when I started tripping and falling and all of the other mobility problems started happening.
After being off the drug a year, the swelling and inflammation have gone down significantly. My legs look normal now. I have my mobility back in my joints, and I no longer drag my foot or fall all of the time. It took quite a while for the inflammation to decrease and get to a point where I could figure out where the inflammation was coming from...because at first, it was all over my body.
Once I was able to pinpoint where it was coming from, it gave the doctors more information to work with.
I am healing slowly. I know I am on the right path. My rheumatologist told me that it could take years to undo all of the damage that the Repatha caused. I just have to be patient.
@gently
Good luck in finding a path that will help you control your cholesterol, and thank you for your kind words. I am happy to hear that my comments have helped you make a decision.
The first two years of being on the drug I did not notice symptoms. I had constant bladder infections and back and hip pain, but did not realize it was from the drug. It was the third year on Repatha that I started having inflammation and tendons snapping for no reason. It was a slow and insidious destruction, so the doctors and I were not attributing it to Repatha. The fourth year of being on the drug was far more damaging and life changing. That is when I started researching and saw the documentation regarding the discrepancies in the Fourier Trials. There was way more information online regarding side effects in 2024 than when I started the drug in 2020.
My back & hip pain and bladder infections completely stopped within two months of being off the drug. After having issues with the snapped tendon for a year and three months while on the drug, my foot finally healed to the point of being able to wear close toed shoes after being off the drug for three months. Unfortunately, the other damage is long term. Still, I am hopeful that I will eventually recover. My doctor has found a statin that actually works for me now. I wish we would have tried that first, but I am happy that we found something that works without damaging me further. Simvastatin worked for me.
I wish you well in your journey finding a medication that will work for you.
@gently
Good luck in finding a path that will help you control your cholesterol, and thank you for your kind words. I am happy to hear that my comments have helped you make a decision.
The first two years of being on the drug I did not notice symptoms. I had constant bladder infections and back and hip pain, but did not realize it was from the drug. It was the third year on Repatha that I started having inflammation and tendons snapping for no reason. It was a slow and insidious destruction, so the doctors and I were not attributing it to Repatha. The fourth year of being on the drug was far more damaging and life changing. That is when I started researching and saw the documentation regarding the discrepancies in the Fourier Trials. There was way more information online regarding side effects in 2024 than when I started the drug in 2020.
My back & hip pain and bladder infections completely stopped within two months of being off the drug. After having issues with the snapped tendon for a year and three months while on the drug, my foot finally healed to the point of being able to wear close toed shoes after being off the drug for three months. Unfortunately, the other damage is long term. Still, I am hopeful that I will eventually recover. My doctor has found a statin that actually works for me now. I wish we would have tried that first, but I am happy that we found something that works without damaging me further. Simvastatin worked for me.
I wish you well in your journey finding a medication that will work for you.
I have been on Repatha for 2.5 years, my brother for about 8. He says he has no side effects. I did not think I had any either. Recently, I was prescribed Ofev by my pulmonologist due to ILD and he think that will slow or stop that progression. For context, I am 81 and also have 3 stents in my LAD artery and also take the anticoagulant, Brilinta. I go to the gym, have a trainer, and walk every day. I do have some side effects, including joint pain, weakness and heart burn, from one of those or the combination. I don't feel all that great much of the time but, a few days ago I missed my morning doses, and felt better all day. I appreciate your comments and I am going to work on this and talk to my doctors. Thanks very much.
@gently
Good luck in finding a path that will help you control your cholesterol, and thank you for your kind words. I am happy to hear that my comments have helped you make a decision.
The first two years of being on the drug I did not notice symptoms. I had constant bladder infections and back and hip pain, but did not realize it was from the drug. It was the third year on Repatha that I started having inflammation and tendons snapping for no reason. It was a slow and insidious destruction, so the doctors and I were not attributing it to Repatha. The fourth year of being on the drug was far more damaging and life changing. That is when I started researching and saw the documentation regarding the discrepancies in the Fourier Trials. There was way more information online regarding side effects in 2024 than when I started the drug in 2020.
My back & hip pain and bladder infections completely stopped within two months of being off the drug. After having issues with the snapped tendon for a year and three months while on the drug, my foot finally healed to the point of being able to wear close toed shoes after being off the drug for three months. Unfortunately, the other damage is long term. Still, I am hopeful that I will eventually recover. My doctor has found a statin that actually works for me now. I wish we would have tried that first, but I am happy that we found something that works without damaging me further. Simvastatin worked for me.
I wish you well in your journey finding a medication that will work for you.
@rhondaj
Hi thanks for your info. Was wondering, do you by chance have a link to the Fourier Trials or can you give me more info so i can try to find the report that you referred to? Thabks!
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@tatiana987, it is good to hear your dizziness and falling are gone. This has to be a tremendous relief!
I agree, it is difficult to sort through what causes what when various problems can cause so many overlapping symptoms. For whatever reason my body requires a pretty strict and consistent diet. Part of this is sugar. I do ok with it when I have other things with it but I learned to never consume it by itself.
You mention MS. Are you able to tell if anything else has changed with your digestion? What do you typically eat?
Ooh, @rhondaj! You definitely do not sound like you are getting better. I am glad you are making progress pinning down more problems, though. Thank you for letting me know.
I do not specifically recall anyone discussing both taking Repatha and venous insufficiency. I spent time wearing compression socks at one point. One foot had started randomly swelling for a few days at a time and the other ankle had an open sore on it that took months to heal.
You may want to consider creating a new discussion with your new information. Do you think this will help?
@jlharsh Thank you for your kind words and your interest.
Yes, there are a few minor issues with digestion that came with the Repatha use. I scheduled an appointment for a colonoscopy, but by the time the appointment was near I was so much better (meaning detoxing) that I cancelled. After that, well I am not 21 years old and my system is far from perfect, but I see nothing dramatic lately. My last Repatha shot was May 21, 2025.
I came to the USA in 2008 and the diet here did not agree with me at all. Too much sugar, too much styrofoam-tasting stuff from boxes, quantities shockingly oversized. In 17 years I have found some solutions, but I have not really adjusted, I get cravings like a pregnant woman and often nothing tastes good to me. I am hungry but food is repulsive often. I guess I like Mexican food and sushi the best of choices here. I have no regular diet, no system. I just try to find good food.
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1 Reaction@jlharsh
Hi Janell,
I don't believe that I have a need to start a new discussion, as I am sure that the venous insufficiency was caused from the Repatha. I know the inflammation and inability to use all of my fingers on my right hand are from the Repatha per the Rheumatologist.
The swelling, pain and inflammation were always my main problems after being on the drug for about three years. I would get swelling in my feet and legs the following day after an injection, and then it would subside a bit after about two weeks. Sometimes it would be in my abdominal area as well. Then I would do another injection, and the same thing would happen. After each injection, it seemed to get worse and worse during that last year. Finally, it got so bad that I insisted on getting off the drug.
It took a few months of telling my endocrinologist that something was severely wrong before he agreed for me to go off of it. By that time, my symptoms were having less days of relief between the injections and the inflammation was increased significantly. My left foot was dragging, and my joints were so stiff that I could not bend. That is when I started tripping and falling and all of the other mobility problems started happening.
After being off the drug a year, the swelling and inflammation have gone down significantly. My legs look normal now. I have my mobility back in my joints, and I no longer drag my foot or fall all of the time. It took quite a while for the inflammation to decrease and get to a point where I could figure out where the inflammation was coming from...because at first, it was all over my body.
Once I was able to pinpoint where it was coming from, it gave the doctors more information to work with.
I am healing slowly. I know I am on the right path. My rheumatologist told me that it could take years to undo all of the damage that the Repatha caused. I just have to be patient.
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2 Reactions@rhondaj
I so appreciate your post. It has completely upended my consideration of Repatha. I'm sorry you have suffered this way. Bless your recovery.
@gently
Good luck in finding a path that will help you control your cholesterol, and thank you for your kind words. I am happy to hear that my comments have helped you make a decision.
The first two years of being on the drug I did not notice symptoms. I had constant bladder infections and back and hip pain, but did not realize it was from the drug. It was the third year on Repatha that I started having inflammation and tendons snapping for no reason. It was a slow and insidious destruction, so the doctors and I were not attributing it to Repatha. The fourth year of being on the drug was far more damaging and life changing. That is when I started researching and saw the documentation regarding the discrepancies in the Fourier Trials. There was way more information online regarding side effects in 2024 than when I started the drug in 2020.
My back & hip pain and bladder infections completely stopped within two months of being off the drug. After having issues with the snapped tendon for a year and three months while on the drug, my foot finally healed to the point of being able to wear close toed shoes after being off the drug for three months. Unfortunately, the other damage is long term. Still, I am hopeful that I will eventually recover. My doctor has found a statin that actually works for me now. I wish we would have tried that first, but I am happy that we found something that works without damaging me further. Simvastatin worked for me.
I wish you well in your journey finding a medication that will work for you.
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2 Reactionsrhondaj, thanks for the well-wishes. I'm planning Leqvio, tentatively.
I have been on Repatha for 2.5 years, my brother for about 8. He says he has no side effects. I did not think I had any either. Recently, I was prescribed Ofev by my pulmonologist due to ILD and he think that will slow or stop that progression. For context, I am 81 and also have 3 stents in my LAD artery and also take the anticoagulant, Brilinta. I go to the gym, have a trainer, and walk every day. I do have some side effects, including joint pain, weakness and heart burn, from one of those or the combination. I don't feel all that great much of the time but, a few days ago I missed my morning doses, and felt better all day. I appreciate your comments and I am going to work on this and talk to my doctors. Thanks very much.
-
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Helpful -
Hug
1 Reaction@rhondaj
Hi thanks for your info. Was wondering, do you by chance have a link to the Fourier Trials or can you give me more info so i can try to find the report that you referred to? Thabks!