Anyone stopped taking Repatha after trying?

Posted by bethrva @bethrva, Jun 4 12:02pm

I experienced stiffness and upper back pain the morning after injecting first dose of Repatha. Began taking Bayer, then Advil, when PCP suggested ibuprofen. On day two, the back pain continued to my shoulder socket and pain increased from about a 3 to about a 6. Today is day four and I am at 6x the recommended dosage of Advil to try and manage the pain. Sent note to PCP this morning that I'm leery about taking a 2nd dose of Repatha and would like to come off of it. Did everyone else soldier on through the 2nd dose? Or tempted to quit but didn't? I injured my back about 12 years ago. It healed with no problems. But the Repatha seems to be hammering at the spot of that old injury. I feel certain it's the Repatha, because nothing else has changed (i.e., not taking any other Rx's, haven't re-injured myself, and was feeling tip-top before the injection). Yoga and ibuprofen aren't having any effect. Sleep has been difficult the last two nights. I can cope okay with the stomach churning and chills; it's the increasing pain and sleeplessness that are wearing me down. If you did quit, can you say roughly how long the Repatha stayed in your system until you felt better? This is the 140 mg/mL dose that you inject twice monthly. On it for high cholesterol of 375 mg/dL.

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Janell, Volunteer Mentor | @jlharsh | Jun 4 3:19pm

Hi @bethrva, and welcome to Mayo Clinic Connect! I am sorry you are experiencing all-over symptoms after taking Repatha. You are so wise to recognize and report it to your doctor right away. A lot of people have great success with Repatha. However, your experience certainly also sounds reasonable and there are other options.

I believe the half-life of this drug is somewhere between 14-17 days, so the amount in your body will increase with your second dose. It will also take several months to get out of your system.

I have genetically high cholesterol and my highest untreated LDL over the years has been what you say your cholesterol is. I took a 3 month break from Repatha after my experience with the drug. Side effects had crept up on me and I got a wake-up call the night after my 9th injection. I thought I felt better after this break and briefly tried Praluent one time, then was done. I quit taking all cholesterol drugs and started LDL apheresis treatments every other week that removed cholesterol from my blood, a process similar to dialysis. I agreed to try Repatha again and it was miserable. Fast forward to now as a cardiology patient at Mayo Clinic MN, my cholesterol is under control for the first time ever AND no more apheresis treatments. It has been a rough road. My encouragement to you is to stay as active as you can through this process.

- You may want to ask your doctor about inclisiran. I was told it is the same as Repatha but in my experience (and my current doctor’s explanation) it is not. https://www.drugs.com/medical-answers/difference-between-leqvio-repatha-3571911/
- I have utmost confidence that Mayo Clinic Cardiology can help you. You may want to contact them to see what your options are. http://mayocl.in/1mtmR63

Is 375 your total cholesterol? If you are comfortable sharing, do you have other challenges with your health?

tcarter1908 | @tcarter1908 | Jun 4 7:49pm

Don’t take anymore of this drug… I’ve been in the hospital 4 times due to severe angioedema. Tongue, face and eyes swelled.

con123 | @con123 | Jun 5 6:14am

I took one injection 4 weeks ago. About the 4th day in I started having facial flushing and severe nasal congestion and discharge like a bad cold. I was several weeks post sinus surgery so I returned to the ENT and they concurred it could be an allergic reaction because I was very inflamed. I also had some low back pain similar to what I had with statins, just not as severe. I’ve slowly returned to normal over a month. I deferred the second shot and see my cardiologist today. It does have a very long half life. After 8 months of no treatment, my lipids were not that bad. 227 total with LDL 85. ratio of 2.9 so I can’t rationalize quality of life limiting side effects to take these meds.

con123 | @con123 | Jun 6 7:14am

In reply to @con123 "I took one injection 4 weeks ago. About the 4th day in I started having facial..." + (show)

Update - cardiologist agreed some people just can’t take them. Said just continue healthy diet and exercise and see an endocrinologist for my labile BP. Suggested fish oil, red rice yeast. I’m relieved. He had not heard of beta sistesterol but I’m going to try that too.

kallettla | @kallettla | Jun 6 10:08am

I just read this. It may of may not be helpful to you.

Sitosterolemia: People with a rare genetic condition called sitosterolemia should avoid beta-sitosterol supplements as they can lead to a buildup of beta-sitosterol and related health issues.

Amy | @amysep67 | Jun 7 4:19am

In reply to @kallettla "I just read this. It may of may not be helpful to you. Sitosterolemia: People with..." + (show)

How do you find out if you have that?

gerrycf | @gerrycf | Jun 7 7:08am

I had very similar experience when I first tried Repatha. I had the lowest 140 mg injectionable. The pain in my back happened again on 2nd injection and I want to mention that I've had back issues for years. I continued with Repatha 2x month and switched to Praluent for cost reasons and not sure if medication is causing back issues but my back seems worse. However, my cholesterol dropped from 2022 when I started from 302 to 160s and I still maintain #s from 153/160s. I have 4 coronary stents in LAD so I "feel" I don't have a choice and ALL other pill statins (I've tried them all) hurt my joints/bones/muscles much more. I have genetic "familial" cholesterol. There are many new RX on the horizon.

kallettla | @kallettla | Jun 7 9:44am

In reply to @amysep67 "How do you find out if you have that?" + (show)

Genetic Component: Sitosterolemia is caused by mutations in the ABCG5 or ABCG8 genes, which are responsible for transporting plant sterols out of the body.

So, I assume a genetic test. But you could Google symptoms of it to see if you suffer from any of them. It is rare!

Amy | @amysep67 | Jun 7 12:57pm

In reply to @kallettla "Genetic Component: Sitosterolemia is caused by mutations in the ABCG5 or ABCG8 genes, which are responsible..." + (show)

Thank you

con123 | @con123 | Jun 8 6:55am

It took me about a month after the injection to feel normal. I won’t be taking any more.

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