“Help. Thanks. Wow”

This past week I have had a “Help. Thanks. Wow” moment, to paraphrase one of my favorite writers, Anne Lamott. You might remember that I have fought and fought with a former cardiologist to get the Evkeeza treatment. I did that for more than two years, after which I had to admit that he was not right for me and we had to part ways. 

Since May of this year when I started with a new cardiologist who thought it was “criminal” (his word, not mine) to keep me away from a very effective treatment that would easily be approved for me when my LDL cholesterol was hanging out at 238 mg/dl (a continent away from my 70 mg/dl target), things have moved pretty fast: I have been approved for Evkeeza and I have already gotten two infusions - in June and July. 

This past week, it was already time for my second infusion. It went with a bit of drama, because it is me, and because I am never easy. The nurse asked me if I had any reaction after the first infusion. I told her that it was not a huge one but that I did have a massive headache that lasted for more than 24 hours. She was all worried that because of how this drug works it might cause a stroke (because of the already existing plaque in my arteries). 

Because the “massive headache” is not one of the “normal” side effects listed in the drug’s prospect papers, she needed someone to verify that it would be OK to continue with the treatment. So, she had to call my pharmacist, her pharmacist, my cardiologist, and I called my Regeneron contact - to ensure it’s safe for me to get the second infusion. After waiting for about two hours, we got all the clearance from everyone and she did the second infusion. 

Getting the second infusion, after the "drama" was over

I will need to remember that the protocol is always the same for each infusion: they will do a pregnancy test before every one of them, then they will draw blood ordered by the doctor. Because my liver has been super sensitive when I have added drugs to my regimen in the past, I always want to keep an eye on my ALT and AST values when I introduce anything new. The doctor had requested only a direct LDL cholesterol level and a lipid panel and I had to do some convincing that she always needs to order a liver panel, too. She eventually found a way to order a CMP (Complete Metabolic Panel) which looks at kidneys, liver, and some other things. 

They will do the lipid and LDL cholesterol every time, before each infusion, to see if the medication works. But she said I will need to talk to the doctor (which I did twice but it didn’t “take”, apparently) to also add a liver panel. We’ll try again. 

Later the same day, I got my results in MyChart and I just about fell off the chair I was sitting on when I saw them: my calculated LDL is now 100 mg/ dl (or my direct LDL is 96 mg/dl) from 226 mg/dl a month ago. 

The lowest value I have ever had was 107 mg/dl about three years ago and that was while I was also taking Nexletol, and it was more of a fluke because it immediately jumped back up to around 120 mg/dl . But I had to stop the Nexletol, because it was causing elevated liver values. After I stopped the Nexletol, the LDL went up to anywhere between 220-280 mg/dl (taking the outlier months out here, when it was even higher, in the 300 range). 

Please click the picture for a larger view

Given that this is just one infusion so far, I do hope that this is just the beginning of an ever-descending trajectory. I cannot explain the feeling of happiness and gratitude that I feel to see that I am moving closer to a “normal” range for something that has been deemed abnormal my entire life! 

I am grateful that I was able to switch doctors, and that this doctor understood the urgency of getting on this treatment and he worked so incredibly fast to get me to it. It’s a great thing when everything lines up. I am also grateful to Regeneron and to my insurance who are helping me pay for this. Although I don’t know how much the “shelf” price is for Evkeeza, I am positive I would not be able to afford it otherwise ... 

I am still in shock, but so elated. 

What I can tell you is this: never ever settle. Never accept “no” for an answer and always look for the right doctor, the right team who will partner with you to give you the best care! 

And just ... “WOW”! 

Much health, everyone!