@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.
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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?
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.
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