@jlharsh
Where did you find a care team that's helping you lower your cholesterol and what are you doing? Mine is not diet or exercise related. It's genetic. I cannot tolerate statins so have been on Repatha for 3 months and knee pain , stiff knee joints all coming back to the extent that I cannot do anything i love any longer. I need to get off of this but I have genetically high cholesterol. Need to find someone who can help me so I can live my life again.
@dee53
I go to Mayo Jacksonville. I do take a statin which was prescribed back in 2015 after a catherization showed some blockage or arteries.
I also take 2,000 mg of fish oil twice a day prescribed by my heart failure doctor. This was prescribed OTC to help with cholesterol and specifically my triglycerides. It cut those in half.
Since statin work on limiting your body from making cholestrol and you have a generic problem with high cholestrol but can't take a statin it is double edge sword.
Do you have access to a major medical facility? I am not sure how far you live from a Mayo, Cleveland Clinic, John Hopkins type facilities but if were you I would reach out for a referral to them or do a self-referral.
Got to be some medications out there to address your bodies making of cholestrol without the side effects of statins. But that is for the medical experts to find for you and why they are there.
Have taken it for several months
More recently I have had low back pain .
orthopedists have said films don’t show significant issues other than degenerative discs
Wondering if the back pain is due to repatha ?
@jlharsh
Where did you find a care team that's helping you lower your cholesterol and what are you doing? Mine is not diet or exercise related. It's genetic. I cannot tolerate statins so have been on Repatha for 3 months and knee pain , stiff knee joints all coming back to the extent that I cannot do anything i love any longer. I need to get off of this but I have genetically high cholesterol. Need to find someone who can help me so I can live my life again.
Like you, @dee53 my high LDL cholesterol is genetic. In fact, I have more than one thing going on explaining why it’s been so tricky. Mayo Clinic Cardiology in Rochester has taken the approach to figure out why my unique LDL is high and then determined how to treat.
Since landing at Mayo in 2021 I have been able to discontinue bi-weekly apheresis and get back on medications. Diet, cardio, and resistance training are helping my body function better so medications can be more effective. A combo of Leqvio injections and three additional meds include two that have caused problems for me in the past. They each work in different ways and I don’t take a high dose of any individual one.
Regardless of where you live I want to encourage you to consider contacting Mayo to find out how they can help you. Here is a summary from the above link that provides a bit about what to expect.
“You may choose a one-time evaluation or a long-term program. A one-time evaluation occurs during 1 to 3 days. Then you'll take your plan to your home primary care provider. The long-term program includes periodic follow-up for you at the Cardiovascular Health Clinic. Cardiac rehabilitation services also are available if you have known heart disease. You may be referred by your primary care provider, or you may make an appointment without a referral.”
Does this information help? Have you been able to visit with your prescribing doctor about your concerns?
Thank you to all who shared their side effects. I have familial hypercholesterolemia. I inherited it from my father's side of the family. I was raised in an environment where it was inconvenient for you to be sick. You were supposed to tough it out and not bother anyone. Statins did not work so I was Rxed Repatha. My first try was for 3 months in 2023 but I had diarrhea interfered with my job and didn't remit until I stopped taking it. My second try came a year later until I gave up in August of this year. I had diarrhea again but it stopped and turned into constipation so that was progress I guess. I wish I had read your stories sooner. I felt like I was the one failing to adjust when other problems occurred. I reported that the muscle fatigue and joint pain was keeping me from walking. I felt like I had the flu with night sweats immediately after each dose. I had sinus infections, UTI, and increased asthma symptoms. I was gaining weight. I tried spacing out the doses. My insurance dropped payment at one point and I noticed that I felt better without Repatha in my system but I started back up. Then I had severe back and shoulder pain so I stopped completely. Now I can see that symptoms I attributed to aging or other things were also probably Repatha. I have been off of it for 2 and a half months. Somethings have improved but the fatigue, muscle weakness, joint and back pain and increased asthma symptoms have not. Today I am going to see another specialist. It makes me wonder how many other people are out their trying to be "good patients" and are not speaking up.
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?
@tatiana987
I did not know that you had MS. Unfortunately, some of the side effects that I had mimicked MS. Hopefully, the Repatha did not increase your MS symptoms.
Thank you to all who shared their side effects. I have familial hypercholesterolemia. I inherited it from my father's side of the family. I was raised in an environment where it was inconvenient for you to be sick. You were supposed to tough it out and not bother anyone. Statins did not work so I was Rxed Repatha. My first try was for 3 months in 2023 but I had diarrhea interfered with my job and didn't remit until I stopped taking it. My second try came a year later until I gave up in August of this year. I had diarrhea again but it stopped and turned into constipation so that was progress I guess. I wish I had read your stories sooner. I felt like I was the one failing to adjust when other problems occurred. I reported that the muscle fatigue and joint pain was keeping me from walking. I felt like I had the flu with night sweats immediately after each dose. I had sinus infections, UTI, and increased asthma symptoms. I was gaining weight. I tried spacing out the doses. My insurance dropped payment at one point and I noticed that I felt better without Repatha in my system but I started back up. Then I had severe back and shoulder pain so I stopped completely. Now I can see that symptoms I attributed to aging or other things were also probably Repatha. I have been off of it for 2 and a half months. Somethings have improved but the fatigue, muscle weakness, joint and back pain and increased asthma symptoms have not. Today I am going to see another specialist. It makes me wonder how many other people are out their trying to be "good patients" and are not speaking up.
@dslaboda
Yes, I was never a "complainer" as well. Unfortunately, I first thought that I was aging fast... which was not the case.
It has been a year now, and I am still suffering from the long term damage that Repatha caused. I do have to say that I am gradually getting better. It was so slow and insidious that it took some time for me to figure out that it was the Repatha causing all of my debilitations. My Rheumatologist has confirmed that I have long term damage from Repatha. She said it could take years for my body to recover.
Don't be hard on yourself, because I felt no improvement when I was at the 2 and a half month point either.
Have taken it for several months
More recently I have had low back pain .
orthopedists have said films don’t show significant issues other than degenerative discs
Wondering if the back pain is due to repatha ?
Hi @rhondaj, I am tagging @donlynn to make sure they see your comment. Donlynn, what has your experience been with Repatha?
Rhondaj, I think I also read that you swim. With the similarities we have in symptoms and what seems to work for each of us I thought I’d pipe in. I spent some time swimming that seemed to really help. Also, have you talked to a pelvic floor therapist at all? There are a lot of muscles, generally a lot going that they understand.
@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.
@tatiana987
I did not know that you had MS. Unfortunately, some of the side effects that I had mimicked MS. Hopefully, the Repatha did not increase your MS symptoms.
@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?
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@dee53
I go to Mayo Jacksonville. I do take a statin which was prescribed back in 2015 after a catherization showed some blockage or arteries.
I also take 2,000 mg of fish oil twice a day prescribed by my heart failure doctor. This was prescribed OTC to help with cholesterol and specifically my triglycerides. It cut those in half.
Since statin work on limiting your body from making cholestrol and you have a generic problem with high cholestrol but can't take a statin it is double edge sword.
Do you have access to a major medical facility? I am not sure how far you live from a Mayo, Cleveland Clinic, John Hopkins type facilities but if were you I would reach out for a referral to them or do a self-referral.
Got to be some medications out there to address your bodies making of cholestrol without the side effects of statins. But that is for the medical experts to find for you and why they are there.
Have taken it for several months
More recently I have had low back pain .
orthopedists have said films don’t show significant issues other than degenerative discs
Wondering if the back pain is due to repatha ?
bmcel, back pain is signaled in the clinical trials of repatha. I'm likely to start the medication soon and greatly appreciate your input.
Like you, @dee53 my high LDL cholesterol is genetic. In fact, I have more than one thing going on explaining why it’s been so tricky. Mayo Clinic Cardiology in Rochester has taken the approach to figure out why my unique LDL is high and then determined how to treat.
Since landing at Mayo in 2021 I have been able to discontinue bi-weekly apheresis and get back on medications. Diet, cardio, and resistance training are helping my body function better so medications can be more effective. A combo of Leqvio injections and three additional meds include two that have caused problems for me in the past. They each work in different ways and I don’t take a high dose of any individual one.
Here is a link that has more information about Mayo’s Cardio Clinic.
- Mayo Clinic Cardiovascular Health Clinic: https://www.mayoclinic.org/departments-centers/cardiovascular-health-clinic/overview/ovc-20442224
Regardless of where you live I want to encourage you to consider contacting Mayo to find out how they can help you. Here is a summary from the above link that provides a bit about what to expect.
“You may choose a one-time evaluation or a long-term program. A one-time evaluation occurs during 1 to 3 days. Then you'll take your plan to your home primary care provider. The long-term program includes periodic follow-up for you at the Cardiovascular Health Clinic. Cardiac rehabilitation services also are available if you have known heart disease. You may be referred by your primary care provider, or you may make an appointment without a referral.”
Does this information help? Have you been able to visit with your prescribing doctor about your concerns?
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Hug
1 ReactionThank you to all who shared their side effects. I have familial hypercholesterolemia. I inherited it from my father's side of the family. I was raised in an environment where it was inconvenient for you to be sick. You were supposed to tough it out and not bother anyone. Statins did not work so I was Rxed Repatha. My first try was for 3 months in 2023 but I had diarrhea interfered with my job and didn't remit until I stopped taking it. My second try came a year later until I gave up in August of this year. I had diarrhea again but it stopped and turned into constipation so that was progress I guess. I wish I had read your stories sooner. I felt like I was the one failing to adjust when other problems occurred. I reported that the muscle fatigue and joint pain was keeping me from walking. I felt like I had the flu with night sweats immediately after each dose. I had sinus infections, UTI, and increased asthma symptoms. I was gaining weight. I tried spacing out the doses. My insurance dropped payment at one point and I noticed that I felt better without Repatha in my system but I started back up. Then I had severe back and shoulder pain so I stopped completely. Now I can see that symptoms I attributed to aging or other things were also probably Repatha. I have been off of it for 2 and a half months. Somethings have improved but the fatigue, muscle weakness, joint and back pain and increased asthma symptoms have not. Today I am going to see another specialist. It makes me wonder how many other people are out their trying to be "good patients" and are not speaking up.
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Hug
4 Reactions@tatiana987
I did not know that you had MS. Unfortunately, some of the side effects that I had mimicked MS. Hopefully, the Repatha did not increase your MS symptoms.
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Helpful -
Hug
1 Reaction@dslaboda
Yes, I was never a "complainer" as well. Unfortunately, I first thought that I was aging fast... which was not the case.
It has been a year now, and I am still suffering from the long term damage that Repatha caused. I do have to say that I am gradually getting better. It was so slow and insidious that it took some time for me to figure out that it was the Repatha causing all of my debilitations. My Rheumatologist has confirmed that I have long term damage from Repatha. She said it could take years for my body to recover.
Don't be hard on yourself, because I felt no improvement when I was at the 2 and a half month point either.
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1 Reaction@bmcel
My back pain went away after getting off Repatha.
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2 Reactions@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.
-
Like -
Helpful -
Hug
3 Reactions@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?
-
Like -
Helpful -
Hug
3 Reactions