As you might remember, I posted in January of this year (https://livingwithfh.blogspot.com/2024/01/even-after-41-years.html) how defeated I felt when the blood tests showed that my total cholesterol was sitting at 423 mg/dl, while my LDL cholesterol was at 358 mg/dl. These are no numbers to feel "safe" at when trying to survive with FH or cardio-vascular disease ...
I also mentioned in January that the cardiologist promised that he has additional things he wants to try, like switching up drugs or trying to approve me for a new drug (Evkeeza) which is an infusion that I would get every month. In January, all he did was to switch my statin drug back to Lipitor (which has worked for me for 20 or so years) but only at a lower dose (40mg instead of the 80mg I used to take before my liver levels decided to go crazy last year). He was hoping that the lower levels will protect the liver more.
In February, he repeated the blood tests, and my cholesterol levels did go down slightly, at 350 mg/dl for the total cholesterol and 279 mg/dl for the LDL. My liver levels were also normal. The cholesterol levels were still far from ideal! In February, I also received a call from the infusion center from my cardiologist's medical system that informed me that the medical system has not only not heard about a drug called Evkeeza, but they don't even know where to buy it from. So, in the meantime, despite the fact that my insurance approved me to be on this specialized drug that requires prior authorization, despite the fact that a doctor in their system recommended it, they cannot administer it to me because their pharmacy is not sure where to buy it from.
I called the manufacturer (Regeneron) directly to ask what are my options here, and they just wanted to talk to my doctor. They asked that I send them the insurance's approval for the drug, and the information about my cardiologist. I did that about two weeks ago and I have heard nothing. I have heard nothing from the drug's manufacturer, nor from the infusion center (who promised they would apply to their pharmacy system in February to find out how they can order the drug). I have also heard nothing from my cardiologist about adding more drugs, or switching anything up in my regimen.
So, it's time once again, to take the matters in my own hands and move on. Some things I have changed myself for now:
- With the help of my family doctor, I got a liver ultrasound done because I wanted to see if there is any visible damage to my liver or any significant (or new) fatty liver disease that might explain the elevated liver levels. The ultrasound confirmed once again the presence of tumefactive bile in my gallbladder, but no other changes to the liver. This gave me some reassurance that there is no damage done to the liver yet. I also have been told over the years that the really dangerous levels of AST or ALT are in the thousands and mine have not been that high. At their highest, they were still three times the recommended levels (at 125 and 95 U/L), but not as high as in the thousands. So, I am hoping we are still in some sort of a safe zone.
- I am staying off the Bempedoic Acid (Nexletol) which has been shown to have some impact on liver levels. After all, I have been on Lipitor for 20+ years with virtually no liver levels elevations and it's been only in the past could of years (since adding the Bempedoic Acid) that the levels have been creeping slowly up. I also know from experience that other drugs can make the statins more toxic, so I am hoping that eliminating a drug that is known to also be toxic for the liver will help the statin work again, more "cleanly".
- I have increased the Lipitor dosage from 40mg back to 80mg which is where it's been for 20+ years.
- I am looking for another cardiologist (finally!) in another medical system, hopefully one that can accommodate the Evkeeza infusion. I will ask them to recheck my liver values once I see them in May. I have waited for two years now for Evkeeza and even when I got the insurance's approval (usually the hardest part of the whole process!), my current team cannot provide the treatment for me. I also am the only one who keeps going back asking for answers, changes, more appointments, more tests - without not much initiative from the doctor. The one thing even worse than the cardiologist is the vascular team who does not treat my abdominal severe stenosis very seriously. So, it's time for a new team. After six years of allowing this current team multiple chances with no changes for the better in my health, it's time to move on.
At a recent seminar offered by the Family Heart Foundation, we were told that in our case "Time is plaque" - and that is so true! Time is always of the essence in FH. The more we wait around with improper (or not enough) treatment, the worse our arteries are getting and the sooner we move towards events that we might or might not survive.
