I have been off Repatha for about eight and a half months and am still having lasting side effects from the drug. I had severe edema, tendons snapping for no reason, constant UTI's, back pain, severe edema and severe joint stiffness to the point of falling over and not being able to get back up. Before getting on this drug, I could do Yoga very easily and was very active. I had absolutely no physical disabilities of any kind. I was on it for four years, and the last two years were horrible. I thought that I was aging fast. I was not. It was the Repatha all along. The edema and joint stiffness are the two remaining conditions. My rheumatologist told me that it may take some time to get the damage reversed. My primary sent me to her because I still have loss of use of my dominant hand and I tested positive for Rheumatoid Arthritis. I changed my diet to a strict Mediterranean diet and removed all nightshade veggies. I did this for a month and then the Rheumatologist retested me. I now read negative for Rheumatoid Arthritis. She said that Repatha did such damage to my body, that it is taking time for my body to heal. She feels that it will eventually recede. She told me that she sees many patients that have had long term side effects from Repatha and other injectable cholesterol drugs. In the meantime, I am have a cardiologist appointment coming up. The next concern is that the edema was so severe in my abdominal area there is some concern that it may have done damage to my heart.
How are you doing, @rhondaj? It has been a couple months since you commented about your journey through all-things Repatha recovery, 10 months after discontinuing the drug. I so hope you are continuing to get better.
We sound similar in that we are both taking one symptom at a time through our respective journeys. I imagine you have been very concerned about your heart and looking forward to getting issues addressed.
Have you seen your cardiologist yet? Are you having cardio, GI, other syptoms at this point?
How are you doing, @rhondaj? It has been a couple months since you commented about your journey through all-things Repatha recovery, 10 months after discontinuing the drug. I so hope you are continuing to get better.
We sound similar in that we are both taking one symptom at a time through our respective journeys. I imagine you have been very concerned about your heart and looking forward to getting issues addressed.
Have you seen your cardiologist yet? Are you having cardio, GI, other syptoms at this point?
Hi Janell,
Still having tests with Cardiologist. GI doctor confirmed that the edema in my stomach is not from a GI concern. I do have gallstones, so that will have to be handled down the road once I figure out how and what is going on...but all organs that he is concerned with are not causing the edema. Rheumatologist said that I definitely do not have Rheumatoid arthritis and the damage to my hand and inflammation is due to the long term damage that Repatha caused. She said she sees this all of the time with people that are taking injectable cholesterol meds. She told me that it may take years for my body to recover from the damage that Repatha did to me.
I still have intermittent edema in my legs and stomach, inflammation not caused by Rheumatoid arthritis and loss of use of my dominant hand...and both hands are no longer strong and I have issues doing normal things like opening a bottle of water, dropping things, putting on shoes, etc. Texting and typing are a chore now, and I still cannot knit. Three of my fingers on my right dominant hand are the most effected and I cannot make a fist.
I am still in the middle of trying to figure out what is causing the edema.
I wish that I had never started Repatha. It has affected my life in such a horrible way. I feel like it robbed my of my life.
Good luck to you as well.
I cannot take statins, tried every kind, every dose. Tried Repatha TWO times. I wanted it to work for me, but, again, the pain reduced my quality of life too much to continue. I just heard about Nexleton for those that can’t tolerate statins. The list of side effects is long and scary. I have been trying these drugs for 30 years and feel like a poster child for horrible side effects that sometimes take months to get over. It feels like I am wrecking my body with these medication “trials.” I am sad and at a loss. My doctor has convinced me that I am dying of CAD, but the only time I feel like I am dying is when I take these medications. I am so worn out.
Hi Janell,
Still having tests with Cardiologist. GI doctor confirmed that the edema in my stomach is not from a GI concern. I do have gallstones, so that will have to be handled down the road once I figure out how and what is going on...but all organs that he is concerned with are not causing the edema. Rheumatologist said that I definitely do not have Rheumatoid arthritis and the damage to my hand and inflammation is due to the long term damage that Repatha caused. She said she sees this all of the time with people that are taking injectable cholesterol meds. She told me that it may take years for my body to recover from the damage that Repatha did to me.
I still have intermittent edema in my legs and stomach, inflammation not caused by Rheumatoid arthritis and loss of use of my dominant hand...and both hands are no longer strong and I have issues doing normal things like opening a bottle of water, dropping things, putting on shoes, etc. Texting and typing are a chore now, and I still cannot knit. Three of my fingers on my right dominant hand are the most effected and I cannot make a fist.
I am still in the middle of trying to figure out what is causing the edema.
I wish that I had never started Repatha. It has affected my life in such a horrible way. I feel like it robbed my of my life.
Good luck to you as well.
Thank you for sharing how recovering is going, @rhondaj. What a long, long road for you. I am hopeful along side you that you will continue to improve.
You mention that you are work with a GI doctor, Rheumatologist, and Cardiologist. With so many systemic issues how did you ever started figuring all of them out? What type of things have helped you, maybe diet, exercise, medications….or has it been simply time?
My primary doctor was ruling out any other causes rather than Repatha for causing the edema and inflammation. I finally realized it was the Repatha when I continued to inject myself and I had major issues for the following week. Then it would subside a little, and then another injection would inflame me even more. Even between injections, I had so much inflammation that it hindered my every day life...but it was increasingly worse every time I would do an injection. There was a significant increase in symptoms every time I would do an injection. I felt like I was 90 years old. Right leg would drag, I would trip all of the time, and it was impossible to put my shoes on or bend over at all. Simple movement became difficult. That is when I pushed the issue of eliminating the Repatha with my endocrinologist and primary doctor. When I fell a week or so after my last injection, I came to a screeching halt and was unable to even take care of myself for months. Neither hand worked at all for months. I could not even go to the bathroom, bathe or dress myself without help. Eating was very difficult as only my pinky finger and ring finger on my left hand worked to eat....but it had no strength at all to even pull up my own underwear. I was unable to do anything for myself for months and months. It was after 6 months of PT (and my dominant right hand was still not better),that I went to my primary doctor and told him that we needed to find out what was going on because even though the inflammation went down significantly after stopping the Repatha, and my leg was no longer dragging I still had edema, inflammation, and unable to use my right hand as I should. The fall should not have injured me as badly as it did. My primary doctor wanted to rule out any other issues causing all of this. I have always been active, and I eat healthier than most Americans...very minimal junk food, minimal processed sugar, very little alcohol (2-4 glasses of wine a month...some months none...I eat fish, chicken, and lots of fruits and veggies, and I drink a lot of water. I only ate red meat and pork about 2-3 times a month. I also try to ingest as little as possible of chemicals and try to eat organic. That is why I knew it was not a bad diet or lack of exercise (I was very active prior to the fall) that caused the problem. The cardiologist put me on a small dose of BP meds with a diuretic in it, but I am still having problems. It is a little better, but is still there. I personally took out all nightshade plants, red meat, pork and eat a very strict Mediterranean diet minus the nightshade plants and the other meats. I also added supplements that reduce inflammation and increase my immune system.
My Rheumatologist finally confirmed my suspicions and told me that it may take years to recover from all of the damage from the Repatha. GI said it was definitely not anything with the GI system that caused it, and now I am in the middle of the cardiology tests. I have no blockage in my heart per the stress test. We started doing a process of elimination of causes and it is all pointing to the Repatha so far.
Janell, Volunteer Mentor | @jlharsh | Aug 23 8:03pm
Awful, @rhondaj!
I love how you are persevering through recovery, and again am hopeful you will get completely get there.
I remember reading your research about the drug, company and trials helped your doctors agree to look at Repatha as your culprit. That led you to Mayo Clinic Connect searching for more people impacted by Repatha. I found Connect in a similar way, seeking out help trying to put together pieces of my own systemic issues. I am glad we connected. I want to invite @dawnrsmith66, @scpatient24, and @tatiana987 because I do not believe they have posted in this discussion but have commented in others about having problems with Repatha.
What have you learned from your research? What cardiovascular symptoms are you having, and are there specific inflammation markers you are trying to improve?
Awful, @rhondaj!
I love how you are persevering through recovery, and again am hopeful you will get completely get there.
I remember reading your research about the drug, company and trials helped your doctors agree to look at Repatha as your culprit. That led you to Mayo Clinic Connect searching for more people impacted by Repatha. I found Connect in a similar way, seeking out help trying to put together pieces of my own systemic issues. I am glad we connected. I want to invite @dawnrsmith66, @scpatient24, and @tatiana987 because I do not believe they have posted in this discussion but have commented in others about having problems with Repatha.
What have you learned from your research? What cardiovascular symptoms are you having, and are there specific inflammation markers you are trying to improve?
How are you doing in your path to recovery? I am hoping that you are getting some relief as well. What symptoms are you still having and what are you doing to improve them? I am open to any and all ideas to get balanced again.
I found that the diet, supplements and pool exercises are giving me the most improvement and relief.
My Rheumatoid factor went from high to negative just from the diet and supplements. I am still working on my sedimentation rate. It goes up and down between blood tests. I am taking no meds for this.
My Blood Pressure has gone from low to high, so that is why cardiologist put me on a low dose BP med with a diuretic. I normally do not have high blood pressure, but it has gone up since my stomach and leg edema have been giving me increased issues (increased again since my plane trip a couple of months ago). I am on a statin for the cholesterol, so am taking two meds.
In an AJMC article (Author Maggie Shaw January 5, 2023), I read that Spain and Canada have put a strong warning for using Evolocumab (Repatha) on adult patients who have established atherosclerotic cardiovasular disease. I read that on an independent review of Repatha in the FOURIER TRIALS the independent study group found an inconsistency rate between the Fourier clinical events and those noted by the local investigator for the CSR. This equates to a different cause of death in 360 of the 870 instances. After the readjudication from the independent study of the FOURIER trials, more people died on the the drug than the placebo group per the independent study. Once I read that, I started researching everything that I could find. I had no issues other than the high cholesterol before taking Repatha, and so I was very concerned because I started to realize that all of my medical problems started after being on this drug.
There is also a BMJ Open article published online December 30, 2022. This led me to reading everything that I could find on the discrepancies regarding Repatha. Of course, Amgen is denying these findings, but I believe the independent studies more.
Being that I had zero symptoms of any kind prior to taking Repatha, and then having such severe symptoms after being on the drug, I made the connection and discussed it with my doctors. It happened so slow and insidious that I did not realize Repatha was doing it to me until the damage was done. The last two years of taking Repatha, I was only on Repatha, so it was easy to know what drug was causing the problem. I have definitely improved since being off the drug, but there is long term damage that I am dealing with now. At least I no longer feel 90 years old and my leg and hip, and arm & shoulder joints are working much better now. No more UTI's since being off the drug, no more back and hip pain, and no more snapping of tendons either. It is the hand joints and edema that are left for me to contend with.
I would love to hear from others as wel,l to see if they are having any of the issues that I have been dealing with since using this drug.
I too appreciate people who are trying to unravel the Repatha issues. Thanks.
I may be in a different category from some people here because I have MS and people with MS were excluded from the Repatha drug trials, I believe. My cardiologist prescibed Inclisiran for me first and Medicare would not pay for that drug until I had first tried Repatha. This is what my cardio folks told me. Looks to me like Medicare decided I should be a drug trial guinea pig. Or did anybody know I had MS? Or am I misinformed?
Connect
Connect
Like
Helpful
Hug
How are you doing, @rhondaj? It has been a couple months since you commented about your journey through all-things Repatha recovery, 10 months after discontinuing the drug. I so hope you are continuing to get better.
We sound similar in that we are both taking one symptom at a time through our respective journeys. I imagine you have been very concerned about your heart and looking forward to getting issues addressed.
Have you seen your cardiologist yet? Are you having cardio, GI, other syptoms at this point?
Hi Janell,
Still having tests with Cardiologist. GI doctor confirmed that the edema in my stomach is not from a GI concern. I do have gallstones, so that will have to be handled down the road once I figure out how and what is going on...but all organs that he is concerned with are not causing the edema. Rheumatologist said that I definitely do not have Rheumatoid arthritis and the damage to my hand and inflammation is due to the long term damage that Repatha caused. She said she sees this all of the time with people that are taking injectable cholesterol meds. She told me that it may take years for my body to recover from the damage that Repatha did to me.
I still have intermittent edema in my legs and stomach, inflammation not caused by Rheumatoid arthritis and loss of use of my dominant hand...and both hands are no longer strong and I have issues doing normal things like opening a bottle of water, dropping things, putting on shoes, etc. Texting and typing are a chore now, and I still cannot knit. Three of my fingers on my right dominant hand are the most effected and I cannot make a fist.
I am still in the middle of trying to figure out what is causing the edema.
I wish that I had never started Repatha. It has affected my life in such a horrible way. I feel like it robbed my of my life.
Good luck to you as well.
-
Like -
Helpful -
Hug
2 Reactionsrhondaj, I'm sorry that you've had all this trouble with edema and repatha. Thank you for your posts. It really helps those of us trying to decide.
-
Like -
Helpful -
Hug
2 ReactionsNexletrol side effect for me is severe anemia.
-
Like -
Helpful -
Hug
1 ReactionThat’s terrible
Thank you for sharing how recovering is going, @rhondaj. What a long, long road for you. I am hopeful along side you that you will continue to improve.
You mention that you are work with a GI doctor, Rheumatologist, and Cardiologist. With so many systemic issues how did you ever started figuring all of them out? What type of things have helped you, maybe diet, exercise, medications….or has it been simply time?
My primary doctor was ruling out any other causes rather than Repatha for causing the edema and inflammation. I finally realized it was the Repatha when I continued to inject myself and I had major issues for the following week. Then it would subside a little, and then another injection would inflame me even more. Even between injections, I had so much inflammation that it hindered my every day life...but it was increasingly worse every time I would do an injection. There was a significant increase in symptoms every time I would do an injection. I felt like I was 90 years old. Right leg would drag, I would trip all of the time, and it was impossible to put my shoes on or bend over at all. Simple movement became difficult. That is when I pushed the issue of eliminating the Repatha with my endocrinologist and primary doctor. When I fell a week or so after my last injection, I came to a screeching halt and was unable to even take care of myself for months. Neither hand worked at all for months. I could not even go to the bathroom, bathe or dress myself without help. Eating was very difficult as only my pinky finger and ring finger on my left hand worked to eat....but it had no strength at all to even pull up my own underwear. I was unable to do anything for myself for months and months. It was after 6 months of PT (and my dominant right hand was still not better),that I went to my primary doctor and told him that we needed to find out what was going on because even though the inflammation went down significantly after stopping the Repatha, and my leg was no longer dragging I still had edema, inflammation, and unable to use my right hand as I should. The fall should not have injured me as badly as it did. My primary doctor wanted to rule out any other issues causing all of this. I have always been active, and I eat healthier than most Americans...very minimal junk food, minimal processed sugar, very little alcohol (2-4 glasses of wine a month...some months none...I eat fish, chicken, and lots of fruits and veggies, and I drink a lot of water. I only ate red meat and pork about 2-3 times a month. I also try to ingest as little as possible of chemicals and try to eat organic. That is why I knew it was not a bad diet or lack of exercise (I was very active prior to the fall) that caused the problem. The cardiologist put me on a small dose of BP meds with a diuretic in it, but I am still having problems. It is a little better, but is still there. I personally took out all nightshade plants, red meat, pork and eat a very strict Mediterranean diet minus the nightshade plants and the other meats. I also added supplements that reduce inflammation and increase my immune system.
My Rheumatologist finally confirmed my suspicions and told me that it may take years to recover from all of the damage from the Repatha. GI said it was definitely not anything with the GI system that caused it, and now I am in the middle of the cardiology tests. I have no blockage in my heart per the stress test. We started doing a process of elimination of causes and it is all pointing to the Repatha so far.
-
Like -
Helpful -
Hug
1 ReactionAwful, @rhondaj!
I love how you are persevering through recovery, and again am hopeful you will get completely get there.
I remember reading your research about the drug, company and trials helped your doctors agree to look at Repatha as your culprit. That led you to Mayo Clinic Connect searching for more people impacted by Repatha. I found Connect in a similar way, seeking out help trying to put together pieces of my own systemic issues. I am glad we connected. I want to invite @dawnrsmith66, @scpatient24, and @tatiana987 because I do not believe they have posted in this discussion but have commented in others about having problems with Repatha.
What have you learned from your research? What cardiovascular symptoms are you having, and are there specific inflammation markers you are trying to improve?
How are you doing in your path to recovery? I am hoping that you are getting some relief as well. What symptoms are you still having and what are you doing to improve them? I am open to any and all ideas to get balanced again.
I found that the diet, supplements and pool exercises are giving me the most improvement and relief.
My Rheumatoid factor went from high to negative just from the diet and supplements. I am still working on my sedimentation rate. It goes up and down between blood tests. I am taking no meds for this.
My Blood Pressure has gone from low to high, so that is why cardiologist put me on a low dose BP med with a diuretic. I normally do not have high blood pressure, but it has gone up since my stomach and leg edema have been giving me increased issues (increased again since my plane trip a couple of months ago). I am on a statin for the cholesterol, so am taking two meds.
In an AJMC article (Author Maggie Shaw January 5, 2023), I read that Spain and Canada have put a strong warning for using Evolocumab (Repatha) on adult patients who have established atherosclerotic cardiovasular disease. I read that on an independent review of Repatha in the FOURIER TRIALS the independent study group found an inconsistency rate between the Fourier clinical events and those noted by the local investigator for the CSR. This equates to a different cause of death in 360 of the 870 instances. After the readjudication from the independent study of the FOURIER trials, more people died on the the drug than the placebo group per the independent study. Once I read that, I started researching everything that I could find. I had no issues other than the high cholesterol before taking Repatha, and so I was very concerned because I started to realize that all of my medical problems started after being on this drug.
There is also a BMJ Open article published online December 30, 2022. This led me to reading everything that I could find on the discrepancies regarding Repatha. Of course, Amgen is denying these findings, but I believe the independent studies more.
Being that I had zero symptoms of any kind prior to taking Repatha, and then having such severe symptoms after being on the drug, I made the connection and discussed it with my doctors. It happened so slow and insidious that I did not realize Repatha was doing it to me until the damage was done. The last two years of taking Repatha, I was only on Repatha, so it was easy to know what drug was causing the problem. I have definitely improved since being off the drug, but there is long term damage that I am dealing with now. At least I no longer feel 90 years old and my leg and hip, and arm & shoulder joints are working much better now. No more UTI's since being off the drug, no more back and hip pain, and no more snapping of tendons either. It is the hand joints and edema that are left for me to contend with.
I would love to hear from others as wel,l to see if they are having any of the issues that I have been dealing with since using this drug.
I too appreciate people who are trying to unravel the Repatha issues. Thanks.
I may be in a different category from some people here because I have MS and people with MS were excluded from the Repatha drug trials, I believe. My cardiologist prescibed Inclisiran for me first and Medicare would not pay for that drug until I had first tried Repatha. This is what my cardio folks told me. Looks to me like Medicare decided I should be a drug trial guinea pig. Or did anybody know I had MS? Or am I misinformed?
-
Like -
Helpful -
Hug
1 Reaction