As I mentioned in my July post (https://livingwithfh.blogspot.com/2025/07/the-end-of-era-good-bye-praluent-hello.html), my insurance decided to stop paying for Praluent and instead force me to switch to Repatha, the other PCSK9 inhibitor drug on the market.
I tried to dissuade them to switch me, quoting concern for developing pre-diabetes (a known side-effect of Repatha) but I got turned down. Not sure by whom, honestly. The nurse at my doctor's office said originally that no, if they require me to be on Repatha, there is no going back to Praluent. Then, when I pushed with "but I have a very large, well-documented family history of diabetes and the doctor promised that he would support my case for sticking with Praluent", she shut me down almost immediately with "Well, we asked, but unless we try it and prove your sugar is going up, they won't budge." Doubtful. When did they ask? In the literally 20 seconds between her firm rebuttal and her mention of asking? But sometimes you choose to not fight every battle and give it a shot.
I had other concerns too, that Repatha might not be as effective for me as Praluent was, or that it might have other side-effects Praluent never had. I also wondered if Repatha might, in any way, interfere with Evkeeza, my infusion drug for HoFH.
I still don't know if it does or not. But since July when I switched to Repatha, I noticed a couple of new things. First, Repatha is not as painful to inject as Praluent was. Maybe the needle is not as large, or maybe the amount of the drug is not as much - I don't know. But it doesn't hurt as it goes in. However, it hurts a lot worse than Praluent after it's in. The injection spot hurts for a couple of days after I take it and my entire leg hurts for a few hours, too. Sometimes till the next day.
I am not sure if this is Repatha or not, but since I switched to it, my LDL numbers went up first, and now, after about 3 months they are just starting to come back slowly. But is that Evkeeza or Repatha's doing?
I was told that I'll see the full effect of Evkeeza at about a year since the start of the infusion. After a year and a month, my LDL was the lowest it has ever been in my life, at 58 mg/dl. Just think about this, for a patient with HoFH that comes from an LDL of close to 600 mg/dl. But then, right after I added Repatha, it starting going slowly up.
After I started Repatha, I also noticed a change in the side effects I feel after the infusion. I have always felt tired the day of the infusion and the next day. For about 24 hours, I feel like I have mild symptoms from taking a vaccine or something. I was used to this. But after starting Repatha (my pharmacist thinks it might be related), I also started feeling very hot and tingly while the Evkeeza solution goes in my vein. And about 48 hours after I take the infusion, my sense of taste is altered. A lot of things taste rotten or putrid. It's like some people report from having Covid. Even my favorite foods, like fish and potato chips taste bitter-rotten of sorts.
I mentioned this to the pharmacist who works with my cardiologist and ordered these prior-authorized drugs for me, and she said there are certain things they can try: they can give me benadryl before the infusion or they can slow down the infusion.
I chose to skip adding yet another drug to my limitless cocktail, so they increased the time. They used to time it for an hour, and now it's timed for an hour and a half. The hot and tingly feeling is much reduced, if at all present. The taste alteration is still there after the infusion but not as long-lasting nor as strong.
I still cannot quite tell whether the change in symptoms to begin with was from any or all of these drug changes or just a coincidence? Nor if the adjustment made any difference or that, too, might have been just a fluke.
The truth still remains that I am still very scared of what Evkeeza might do, apart from truly keeping my LDL levels low. The drug definitely seems incredibly potent for LDL cholesterol, even as stubborn as mine has been historically. But it just got approved for kids as young as 1 year olds (look it up, please!), so here's hoping that they have enough strong, pertinent research to make such a groundbreaking decision (some countries don't even approve statins for kids under 18 and we feel like we know everything there is to know about them) . I am also scared of Repatha too, because it is relatively new (only 10 years old) and it's new to me. So, I am sure there is a lot more room to learn here.
For now, I am enjoying the lower numbers, hopeful that they will protect my arteries for a little while longer. I am also happy so far that my sugar has not increased, yet. Still watching it like a hawk, though, and asking for a test for it every chance I get.
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