@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 think the same thing sometimes. But research on people who take the meds AFTER a serious cardiac event is crystal clear, or so I understand. It’s yes AFTER serious event and debatable before. That is my current view.
@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 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.
Hi, @martspir. It sounds like your body is not responding well to Repatha. You have probably read on Connect how Repatha’s side effects can be sneaky making it helpful to track a timeline of treatment dates and adverse feelings. Thankfully like you mention looking for options, several treatments are available.
I am not a trained medical professional, but a someone trying to control LDL cholesterol like you. My current care team has helped me get to where I am now. My LDL is controlled better than it has ever been. I can share what I have learned some of what I have learned from my experience, like:
- with statins, more is not necessarily better. They seem to work better at lower doses and at times, less frequency than taking them every day. A little bit of another drug added may actually give better results than either drug would do on their own.
- Inclisiran is a new injection that one of my doctors told me worked the same as Repatha. But, it works differently. I am taking it and do not have the side effects I’ve had with Repatha (or other treatments).
Have you had a chance to discuss how you are feeling with your prescribing doctor?
Janell, is Inclisiran side effect free for you. Was there intensity with having the first two injections so close together? Was the first injection easy.
Hi, @martspir. It sounds like your body is not responding well to Repatha. You have probably read on Connect how Repatha’s side effects can be sneaky making it helpful to track a timeline of treatment dates and adverse feelings. Thankfully like you mention looking for options, several treatments are available.
I am not a trained medical professional, but a someone trying to control LDL cholesterol like you. My current care team has helped me get to where I am now. My LDL is controlled better than it has ever been. I can share what I have learned some of what I have learned from my experience, like:
- with statins, more is not necessarily better. They seem to work better at lower doses and at times, less frequency than taking them every day. A little bit of another drug added may actually give better results than either drug would do on their own.
- Inclisiran is a new injection that one of my doctors told me worked the same as Repatha. But, it works differently. I am taking it and do not have the side effects I’ve had with Repatha (or other treatments).
Have you had a chance to discuss how you are feeling with your prescribing doctor?
@jlharsh Thanks for your posting responding to possible side effects of Repatha. I have been on it for 9 months and my LDL has been reduced by 50%. That part is great because I have high levels of Lp(a) resulting in familial hypercholeremia. I did not think I was experiencing side effects, but in reading the many comments on this site, I realize that I am now having side effects that are serious: sudden cognitive impairment, depression, muscle weakness, exhaustion and dizziness. I am 82 and have always had very healthy eating and exercising habits so all of these symptoms are recent and sudden. I am wondering if you or others have had any of these side effects when you were on Repatha. (Apologies if you have posted on this earlier than the post I saw above.) I am also wondering if you had any trouble switching to Inclirisan in terms of any residual Repatha symptoms. Thanks and comments would be greatly appreciated from any members of this group!
@jlharsh Thanks for your posting responding to possible side effects of Repatha. I have been on it for 9 months and my LDL has been reduced by 50%. That part is great because I have high levels of Lp(a) resulting in familial hypercholeremia. I did not think I was experiencing side effects, but in reading the many comments on this site, I realize that I am now having side effects that are serious: sudden cognitive impairment, depression, muscle weakness, exhaustion and dizziness. I am 82 and have always had very healthy eating and exercising habits so all of these symptoms are recent and sudden. I am wondering if you or others have had any of these side effects when you were on Repatha. (Apologies if you have posted on this earlier than the post I saw above.) I am also wondering if you had any trouble switching to Inclirisan in terms of any residual Repatha symptoms. Thanks and comments would be greatly appreciated from any members of this group!
@lulad01 You are having serious symptoms that do need addressed with your doctor. I am tagging @bethrva , @rhondaj and @llynch17056 who have had adverse experiences with Repatha and may know of others.
Excellent question about switching from Repatha to Inclisiran. I have had several things going on so not able to definitively seperate what caused what side effects/symptoms. I can tell you it was a process from when I quit taking Repatha to when I started Inclisiran! Diet and exercise have helped tremendously. I am not sure what that would look like for you. I do know getting Repatha out of your system will take about 3 months.
What I can tell you, I have taken about every possible drug that lowers cholesterol and I am pleased with Inclisiran. I did have one bad night after my first injection, then another not quite as bad after the second. I didn’t notice anything with subsequent shots, until my most recent one, #6. I believe it helped, I feel better!
I am interested to hear updates on how you are doing. Will you come back and let me know? Do you think you will talk to your doctor about your symptoms and/or discontinuing Repatha?
Janell, is Inclisiran side effect free for you. Was there intensity with having the first two injections so close together? Was the first injection easy.
@gently
I have a high deductible insurance plan and depending on where I’m at with my out-of-pocket I may have to pay a chunk….at first. In my plan, what I pay for medications get combined with other costs (doctor, etc.) for one total. Then, the drug company has reimbursed me for what I paid. I also see on the drugs website information for Medicare patients as well as a statement, “ The LEQVIO list price for uninsured patients is $3,587.73 per dose.”
- Leqvio/Inclisiran website: https://www.leqvio.com/savings-and-support/savings
My experience has been absolutely nothing like taking Repatha. I felt Repatha build up in my body, slowly shot by shot. Once I quit it took some time to feel relief.
I had confirmed with my pharmacist that the actual Inclisiran drug stays in the body about 2 days. Like I mentioned to @lulad01, I did have some reaction. I don’t think having the shots close together made a difference though. Also, I was having problems before starting these new injections (Repatha?). What I experienced was what I had been experiencing, but more intense and for a super brief amount of time within that 2 day window. The good news is that my most recent injection actually flipped sides, so to speak. I noticed a marked improvement after getting it. https://connect.mayoclinic.org/comment/1434143/
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.
Hi @jrm78, welcome to Connect! I am sorry you are having problems, sounding like Repatha may be the culprit. It is important to pay attention to when you take shots and when you have breathing problems. You may find a connection, and if so it may be sneaky. It is a good thing you are checking with your cardiologist and pulmonologist to make sure something else isn’t going on. I understand why you consider Repatha as the cause because of the timing of when you started having problems.
Like you, I found the drug company that makes Repatha to be less than helpful. My experience was that the night following injection #9 I abruptly woke and sat straight up in bed thinking I had forgotten to breathe.
I searched “Repatha breathing” from the home page and found discussions and comments you may find helpful, if you have not reviewed already. https://connect.mayoclinic.org/search/
You mention having more testing coming up. I am interested to know what you find out and hope you come back and provide and update.
@gently
I have a high deductible insurance plan and depending on where I’m at with my out-of-pocket I may have to pay a chunk….at first. In my plan, what I pay for medications get combined with other costs (doctor, etc.) for one total. Then, the drug company has reimbursed me for what I paid. I also see on the drugs website information for Medicare patients as well as a statement, “ The LEQVIO list price for uninsured patients is $3,587.73 per dose.”
- Leqvio/Inclisiran website: https://www.leqvio.com/savings-and-support/savings
My experience has been absolutely nothing like taking Repatha. I felt Repatha build up in my body, slowly shot by shot. Once I quit it took some time to feel relief.
I had confirmed with my pharmacist that the actual Inclisiran drug stays in the body about 2 days. Like I mentioned to @lulad01, I did have some reaction. I don’t think having the shots close together made a difference though. Also, I was having problems before starting these new injections (Repatha?). What I experienced was what I had been experiencing, but more intense and for a super brief amount of time within that 2 day window. The good news is that my most recent injection actually flipped sides, so to speak. I noticed a marked improvement after getting it. https://connect.mayoclinic.org/comment/1434143/
@jlharsh
Thanks for your detailed reply. I'm thinking of skipping Repatha and taking Inclisiran. While I'm most afraid of losing weight on these medications because of the digestive issues, I'm not very good at suffering. I'm impressed when people say that they only had headache for a week or that stomach troubles go away after a few months. I'm a wimp. But I've heard that myocardial infarction is extremely painful. And I'd like to avoid the cardiac surgeries that are probably ten years away. I'd rather wait for crispr. https://newsroom.heart.org/news/first-in-human-trial-of-crispr-gene-editing-therapy-safely-lowered-cholesterol-triglycerides
The liver problems with these drugs are concerning, but the discomfort seem prohibitive
I sincerely appreciate your encouragement.
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@martspir I think the same thing sometimes. But research on people who take the meds AFTER a serious cardiac event is crystal clear, or so I understand. It’s yes AFTER serious event and debatable before. That is my current view.
@backhand
I got off repatha due to back pain
Just switched to praluent as it does not list back pain as a side effect
Time will tell
@bmcel
Let us know how it goes. That could be another option. Thanks for letting us know.
Hi, @martspir. It sounds like your body is not responding well to Repatha. You have probably read on Connect how Repatha’s side effects can be sneaky making it helpful to track a timeline of treatment dates and adverse feelings. Thankfully like you mention looking for options, several treatments are available.
I am not a trained medical professional, but a someone trying to control LDL cholesterol like you. My current care team has helped me get to where I am now. My LDL is controlled better than it has ever been. I can share what I have learned some of what I have learned from my experience, like:
- with statins, more is not necessarily better. They seem to work better at lower doses and at times, less frequency than taking them every day. A little bit of another drug added may actually give better results than either drug would do on their own.
- Inclisiran is a new injection that one of my doctors told me worked the same as Repatha. But, it works differently. I am taking it and do not have the side effects I’ve had with Repatha (or other treatments).
Have you had a chance to discuss how you are feeling with your prescribing doctor?
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4 ReactionsJanell, is Inclisiran side effect free for you. Was there intensity with having the first two injections so close together? Was the first injection easy.
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1 Reaction@jlharsh Thanks for your posting responding to possible side effects of Repatha. I have been on it for 9 months and my LDL has been reduced by 50%. That part is great because I have high levels of Lp(a) resulting in familial hypercholeremia. I did not think I was experiencing side effects, but in reading the many comments on this site, I realize that I am now having side effects that are serious: sudden cognitive impairment, depression, muscle weakness, exhaustion and dizziness. I am 82 and have always had very healthy eating and exercising habits so all of these symptoms are recent and sudden. I am wondering if you or others have had any of these side effects when you were on Repatha. (Apologies if you have posted on this earlier than the post I saw above.) I am also wondering if you had any trouble switching to Inclirisan in terms of any residual Repatha symptoms. Thanks and comments would be greatly appreciated from any members of this group!
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1 Reaction@lulad01 You are having serious symptoms that do need addressed with your doctor. I am tagging @bethrva , @rhondaj and @llynch17056 who have had adverse experiences with Repatha and may know of others.
Excellent question about switching from Repatha to Inclisiran. I have had several things going on so not able to definitively seperate what caused what side effects/symptoms. I can tell you it was a process from when I quit taking Repatha to when I started Inclisiran! Diet and exercise have helped tremendously. I am not sure what that would look like for you. I do know getting Repatha out of your system will take about 3 months.
What I can tell you, I have taken about every possible drug that lowers cholesterol and I am pleased with Inclisiran. I did have one bad night after my first injection, then another not quite as bad after the second. I didn’t notice anything with subsequent shots, until my most recent one, #6. I believe it helped, I feel better!
I am interested to hear updates on how you are doing. Will you come back and let me know? Do you think you will talk to your doctor about your symptoms and/or discontinuing Repatha?
-
Like -
Helpful -
Hug
3 Reactions@gently
I have a high deductible insurance plan and depending on where I’m at with my out-of-pocket I may have to pay a chunk….at first. In my plan, what I pay for medications get combined with other costs (doctor, etc.) for one total. Then, the drug company has reimbursed me for what I paid. I also see on the drugs website information for Medicare patients as well as a statement, “ The LEQVIO list price for uninsured patients is $3,587.73 per dose.”
- Leqvio/Inclisiran website: https://www.leqvio.com/savings-and-support/savings
My experience has been absolutely nothing like taking Repatha. I felt Repatha build up in my body, slowly shot by shot. Once I quit it took some time to feel relief.
I had confirmed with my pharmacist that the actual Inclisiran drug stays in the body about 2 days. Like I mentioned to @lulad01, I did have some reaction. I don’t think having the shots close together made a difference though. Also, I was having problems before starting these new injections (Repatha?). What I experienced was what I had been experiencing, but more intense and for a super brief amount of time within that 2 day window. The good news is that my most recent injection actually flipped sides, so to speak. I noticed a marked improvement after getting it. https://connect.mayoclinic.org/comment/1434143/
What are you thinking?
Hi @jrm78, welcome to Connect! I am sorry you are having problems, sounding like Repatha may be the culprit. It is important to pay attention to when you take shots and when you have breathing problems. You may find a connection, and if so it may be sneaky. It is a good thing you are checking with your cardiologist and pulmonologist to make sure something else isn’t going on. I understand why you consider Repatha as the cause because of the timing of when you started having problems.
Like you, I found the drug company that makes Repatha to be less than helpful. My experience was that the night following injection #9 I abruptly woke and sat straight up in bed thinking I had forgotten to breathe.
I searched “Repatha breathing” from the home page and found discussions and comments you may find helpful, if you have not reviewed already.
https://connect.mayoclinic.org/search/
You mention having more testing coming up. I am interested to know what you find out and hope you come back and provide and update.
Do you plan to continue Repatha?
@jlharsh
Thanks for your detailed reply. I'm thinking of skipping Repatha and taking Inclisiran. While I'm most afraid of losing weight on these medications because of the digestive issues, I'm not very good at suffering. I'm impressed when people say that they only had headache for a week or that stomach troubles go away after a few months. I'm a wimp. But I've heard that myocardial infarction is extremely painful. And I'd like to avoid the cardiac surgeries that are probably ten years away. I'd rather wait for crispr. https://newsroom.heart.org/news/first-in-human-trial-of-crispr-gene-editing-therapy-safely-lowered-cholesterol-triglycerides
The liver problems with these drugs are concerning, but the discomfort seem prohibitive
I sincerely appreciate your encouragement.
-
Like -
Helpful -
Hug
1 Reaction