1. < Heart & Blood Health

Repatha shots, twice a month and Farxiga daily! Any long term effects?

Posted by manisham @manisham, Jun 15, 2023

I recently started taking Farxiga daily and Repatha shots twice a month. I have read and I understand the issues concerning side effects. I wanted to know if any one has heard of any long term effects! According to my cardiologist I will have to take these for rest of my life , along with 5-6 other heart medications. Was any one able to get off these meds? I am 72 years, female. Thanks. ☮️

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

ativ1207 | @ativ1207 | Jun 16, 2023

I am taking Praluent injections twice a month, similar to Rapatha because my insurance covers it. Dropped my total cholesterol to 100. So far have not felt any side effects after 10 months. Do no know long term effects since it is a fairly new drug

REPLY
1 reply
manisham | @manisham | Jun 16, 2023
In reply to @ativ1207 "I am taking Praluent injections twice a month, similar to Rapatha because my insurance covers it...." + (show)
@ativ1207

I am taking Praluent injections twice a month, similar to Rapatha because my insurance covers it. Dropped my total cholesterol to 100. So far have not felt any side effects after 10 months. Do no know long term effects since it is a fairly new drug

Jump to this post

Thank you for the info! Yes this meds do drop cholesterol level! Wish you all the best!

REPLY
rhondaj | @rhondaj | 4 days ago

I had horrific long term side effects from Repatha and am still dealing with the damage that it caused. I was on it for four years. I thought I was just aging fast, but found out that it was the Repatha all along. The first two years went well, but then multiple problems started occurring. I started losing mobility in my hips and knees with severe pulling in my thighs. I would walk like a penguin the first 30 minutes in the morning until I could get my legs to work right. I had unnoticeable UTI's several times a year, back pain, fatigue, then snapping of a tendon in my foot for no reason, and finally severe edema in my legs and stomach. Also, I started losing my hair. When I spoke to my doctor about it, he said that the edema and some of the other mentioned issues were not listed as side effects of the drug. I did another shot and the edema came back and was severe in my abdomen and legs and my left leg seemed to drag. I was tripping all of the time. I started doing research on my own, and read that the results of the Fourier trials for the clinical studies had a 41.3 inconsistency of actual results. More people died on the drug than the placebo group. That is when I started reading about people having the same issues like myself. I was a very active person before taking this drug with no problems except for my cholesterol. The drug was insidious, as the symptoms creeped up on me slowly, so I did not realize for quite some time that it was the drug slowing me down and causing these symptoms. I finally insisted on getting off the drug. A week after I went off the drug, I fell and broke my hand and injured all of my fingers. I am still dealing with issues in my right dominant hand and can not close it. It is very painful. Now I discover that I have RA, which is an autoimmune disease. I had absolutely zero symptoms before using this drug with all of these issues and no signs of RA or autoimmune issues at all. The edema went down within the first few weeks of being off the drug...but I still feel some in my left leg at times. I had zero edema before taking this drug. The tendon in my foot that snapped (a year and a half earlier) finally healed after being off the drug for two months, no more UTI's or back pain. My hair grew back. No thigh pain and the extreme muscle pulling is gone. My energy is back and now I am having to deal with all of the long term damage that the drug has caused. My doctor found a statin that I can tolerate. Now, my doctor wants me to see a cardiologist to make sure that no damage was done. I had a stress test a couple of years before starting this drug and the stress test came out normal. I am worried that the severe abdominal edema could have done damage to my heart. Are there any people out there that have had the same issues as myself using this drug?

REPLY
1 reply
Mentor
Janell, Volunteer Mentor | @jlharsh | 3 days ago
In reply to @rhondaj "I had horrific long term side effects from Repatha and am still dealing with the damage..." + (show)
@rhondaj

I had horrific long term side effects from Repatha and am still dealing with the damage that it caused. I was on it for four years. I thought I was just aging fast, but found out that it was the Repatha all along. The first two years went well, but then multiple problems started occurring. I started losing mobility in my hips and knees with severe pulling in my thighs. I would walk like a penguin the first 30 minutes in the morning until I could get my legs to work right. I had unnoticeable UTI's several times a year, back pain, fatigue, then snapping of a tendon in my foot for no reason, and finally severe edema in my legs and stomach. Also, I started losing my hair. When I spoke to my doctor about it, he said that the edema and some of the other mentioned issues were not listed as side effects of the drug. I did another shot and the edema came back and was severe in my abdomen and legs and my left leg seemed to drag. I was tripping all of the time. I started doing research on my own, and read that the results of the Fourier trials for the clinical studies had a 41.3 inconsistency of actual results. More people died on the drug than the placebo group. That is when I started reading about people having the same issues like myself. I was a very active person before taking this drug with no problems except for my cholesterol. The drug was insidious, as the symptoms creeped up on me slowly, so I did not realize for quite some time that it was the drug slowing me down and causing these symptoms. I finally insisted on getting off the drug. A week after I went off the drug, I fell and broke my hand and injured all of my fingers. I am still dealing with issues in my right dominant hand and can not close it. It is very painful. Now I discover that I have RA, which is an autoimmune disease. I had absolutely zero symptoms before using this drug with all of these issues and no signs of RA or autoimmune issues at all. The edema went down within the first few weeks of being off the drug...but I still feel some in my left leg at times. I had zero edema before taking this drug. The tendon in my foot that snapped (a year and a half earlier) finally healed after being off the drug for two months, no more UTI's or back pain. My hair grew back. No thigh pain and the extreme muscle pulling is gone. My energy is back and now I am having to deal with all of the long term damage that the drug has caused. My doctor found a statin that I can tolerate. Now, my doctor wants me to see a cardiologist to make sure that no damage was done. I had a stress test a couple of years before starting this drug and the stress test came out normal. I am worried that the severe abdominal edema could have done damage to my heart. Are there any people out there that have had the same issues as myself using this drug?

Jump to this post

Hi @rhondaj I relate to how you say your symptoms creeped up on you. I recognized after 9 injections when I suddenly woke and sat up in the middle of the night thinking I had forgotten to breathe. At that point it came along with chest pain. Looking back, it crept up on me. Repatha did not help my LDL as much it should have, either. I distinctly remember sitting in my PCPs office at the exact time I was starting it, telling him “I feel really good”. I think that was January 2018. And then…..

I cannot tell you precisely what it did to me because other things going on at the same time, and I am finally in a place with doctors understanding just how to sort through it all. TBD I guess. I do relate to some of what you have experienced. I can tell you I tried communicating with the drug company’s nurse assigned to me and once I started having problems I could not get ahold of her.

I lost my identify in my medical records and am working through systemic health issues.

Where did you more people like you?

REPLY
1 reply
rhondaj | @rhondaj | 3 days ago
In reply to @jlharsh "Hi @rhondaj I relate to how you say your symptoms creeped up on you. I recognized..." + (show)
@jlharsh

Hi @rhondaj I relate to how you say your symptoms creeped up on you. I recognized after 9 injections when I suddenly woke and sat up in the middle of the night thinking I had forgotten to breathe. At that point it came along with chest pain. Looking back, it crept up on me. Repatha did not help my LDL as much it should have, either. I distinctly remember sitting in my PCPs office at the exact time I was starting it, telling him “I feel really good”. I think that was January 2018. And then…..

I cannot tell you precisely what it did to me because other things going on at the same time, and I am finally in a place with doctors understanding just how to sort through it all. TBD I guess. I do relate to some of what you have experienced. I can tell you I tried communicating with the drug company’s nurse assigned to me and once I started having problems I could not get ahold of her.

I lost my identify in my medical records and am working through systemic health issues.

Where did you more people like you?

Jump to this post

Hi Janell,
Not surprising that the Repatha nurse disappeared when you started having problems, being that they "fudged' on the results to get the drug passed through the Fourier trials to begin with.
I decided to find people with similar problems regarding this drug. Something must be done to get our symptoms out to the public.
I "found instances of bad results from Repatha" online. You are the first actual person that I have spoken to. I found medical reports showing many of the same issues that I have been dealing with. I know they are from Repatha, because I have gotten so much better since getting off the drug. I am still dealing with long term issues, but the extreme edema along with the other symptoms improved as soon as the drug was out of my system. It was gradual, as it takes three months to get the drug completely out of your system per what I have been reading online. I felt a remarkable change within a month of being off the drug.
There was an article written on January 5, 2023 by Maggie L Shaw regarding a strong warning against Repatha. The article was" Experts Issue Caution for Evolocumab Following New Review of FOURIER Data: Amgen Disputes the Claims".
That is when I started digging for more information. I found a case report regarding Chronic Inflammatory Demyelinating Polyradiculoneuopathy Association with Low Choselsterol levels: "A Case Report in a Patient Taking PCSK9 Inhibitor". It was written by Diana Carolina Franco, Neelam Neoprene, Maria Riaz, San Mohammadzadch, and Issac Sachmechi.
This was written by medical professionals.
I found something months earlier on the Mayo Clinic site regarding Repatha as well. I had printed about five articles and showed them to my doctor months ago when I started suspecting that Repatha was the link to my problems. I was looking to find it again (since I gave the printouts to my doctor), when I came across this platform.
I finally decided that I needed to reach out to others as I know I am not the only one that has suffered from this drug.

REPLY
Mentor
Janell, Volunteer Mentor | @jlharsh | 2 days ago

Hi @manisham
I don’t know anything about Farxiga but did not have a good experience with Repatha. Having said that, I have family members taking it with great success. We are all so different, even within one family.

I did a quick search at the top of the home page and found several discussions about Repatha, with mixed reviews. Most are positive. Full disclosure, I searched for Farxiga but haven’t read any of them. Based on my experience with Repatha I would recommend staying tuned into how your body is feeling, reporting anything different to your doctor.
https://connect.mayoclinic.org/search/discussions/?search=Repatha
https://connect.mayoclinic.org/search/discussions/?search=Farxiga
How are you doing since starting Repatha and Farxiga?

REPLY
Please sign in or register to post a reply.