Repatha (Evolocumab) jab experiences?

[Abbyroza]

Has anyone here tried the statin Repatha (Evolocumab) jabs to lower cholesterol, instead of oral statins?

If so, what was your experience and was there any influence on your AF or other heart issues?

Thank you!

[Efka]

Hi, can’t help with any personal story as my husband (with afib) decided to decline this treatment for now. A bit too unsure of monoclonal antibody treatments.

John Mandrola (Sensible Medicine Substack) whom pops up here on occasion as a source has written a Substack on this drug and a trial back in January 2023 which might be of interest.

Best of luck, Eva

[Blearyeyed]

Can't say as I'm doing fine with Rosuvastatin and Ezetimibe for cholesterol control and I have Familial Hypercholesterolemia.I will say I personally would think twice now before trying another Biologic injection. Although if I did consider one it would be likely to be Repatha because I assume it's had more testing and patient experience within the cardiovascular community than other biologic treatments.

Last year I was persuaded to try an injection called Ajovy for my Migraines and Cluster Headaches.

I was a little concerned because a fast heart rate was one of the main side effects and it hadn't had stringent tests on people with cardiac or arrhythmia conditions and obviously the effects of these medications usually last a month.

Finally , I chose to try it, at the time I was still suffering with severe pain and nerve symptoms for at least 15 days a month and the thought of a medication that could stop that made it worth trying.

Unfortunately, it did cause my tachycardia conditions to increase and brought on AFib and more vasospasm , which because it was in my system continued off and on for at least six weeks until the medication was out of my system and my daytime orthostatic tachycardia symptoms are still not as good as they were before it.

Ironically, because my neurological problems are closely linked to my cardiac ones I got even more Migraines!

Basically, I've just added this in in case anyone with both AFib or Arrhythmias , Dysautonomia conditions, POTs or other cardiac problems are offered Ajovy for headaches that they have more information from a patient with experience of what they have.

In future, I'm going to make sure any long lasting medication ( like month long injections or implants) I'm offered has been properly tested and proved as safe for patients with cardiac and vascular conditions, because once it's in you, you are stuck with the side effects unlike with a daily oral medication or a patch or even a weekly injection.

If it's been well tested with positive results I'd still consider it, but if there are no significant results for cardiac patients , and common side effects include very fast heart rate or arrhythmia I am going to give it a miss.

[Abbyroza in reply to Blearyeyed]

Thank you for this thorough review. In the meantime I have talked to a very close friend, who is an experienced MD and she’s reluctant to prescribe Repatha to her patients because it is interfering with neutralizing antibodies, more or less like mRNA vaccines are doing. That’s more than enough for me to take a wide berth around this novel jab. So I’ve decided it’s not for me and I’ll stick with oral statins. ( Pravastatin and Ezetimibe).

Moreover, my friend MD has second thoughts about the effect of a very low LDL-count during a very long period (years): as this very low threshold is novel as well (since 2023) there is no experience or record about what it does in the long run, for example to cognitive decline. I shall research this further before I start taking Pravastatin and Ezetimibe in doses that lower my LDL to around 50 as per new cardiologist Mc4 protocol.

If I have to choose between a (second) heart attack and ending up crazy or with dementia, I think I tend to prefer the HA. 😉

[lizzieloo2]

My husband has been taking evolocumab since September 2022, following a heart attack in April 2022 caused by cholesterol blocking his arteries. He is intolerant of statins so was referred to the lipid clinic after having a stent fitted. He does get some muscular pains but on the whole tolerates it quite well. His main gripe is that it continually causes either a runny nose or a lot of dried mucus in his nose which is difficult to remove. Sterimar helps somewhat but he always has mild cold symptoms. We get the drug delivered by a private medical company although it is prescribed via our NHS consultant. Unfortunately, we are dependent on the hospital issuing the prescriptions on time. We had a problem just before Christmas 2023 and it looks like there is going to be a delay again now. On the plus side, his cholesterol lowered from 7 to 3 after just 2 injections