Even After 41 Years ...

Happy new year, everyone! I truly hope for a better and healthier year, for all of us! 

It’s a rainy and unseasonably warm evening here in North Carolina tonight. It’s around 65 at 8PM which is unreal for a January day ... But there you have it ... The fog is rolling in, making it feel very British ... 

Last year ended on a not so good note for me, healthwise ... My liver values (AST and ALT) started going up and my cardiologist and I have no idea why. We have not changed anything in my drug regimen, nor in my diet. Outside of a (much) higher level of stress, we cannot figure out what could be making my liver enzymes go up, and - at the same time - my cholesterol levels as well. Maybe a sign that whatever drugs need to be processed in the liver are not being processed well anymore. Or who knows?! 

Since September of last year, when my LDL levels jumped from 125 to 144 mg/dl and my AST/ ALT levels jumped from 47/44 to 125/95 U/L(normal values are up to 41/49 U/L), we have been trying to switch drugs around to see which one of them if any, are causing the jump in the liver enzymes first ... 

We know that taking the statin drug (Lipitor) away from the regimen makes the enzymes come to completely normal levels. Leaving the statin in but taking the Bempedoic Acid (the other drug in my cocktail that is known to modify liver enzymes) away makes the enzymes close to the normal levels but not fully normal - still a little elevated. 

We never tested for the cholesterol levels during this time of starting and stopping the drugs, because we figured it would be high since we were reducing the amount of drugs in the mix. In December, the doctor replaced the statin (Lipitor) with a less strong one (Pravastatin) for a month, then he did a cholesterol check in January. The liver enzymes were totally normal, but the cholesterol ... oh, wow! 

At that time, while taking Pravastatin (40mg), Ezetimibe and Praluent, my cholesterol values were 423 mg/dl (total cholesterol) and 358 mg/dl (LDL cholesterol). Both the doctor and myself were shocked. Shocked and defeated that the Ezetimibe and the Praluent were not making more of a difference. Last time my LDL cholesterol was anywhere near this level (it was 344 mg/dl) was in 2014. 10 years ago! 

My big LDL jump to 358 mg/dl - January 2024

It’s been over 20 years since I have measured my cholesterol with no drugs at all. In 1999, my total cholesterol was 526 and my LDL cholesterol was 475 mg/dl with no drugs. That is, if you will, my baseline ... As you can see above, being on three drugs is not moving me  much more away from those numbers. None of the promised “up to 50% reduction” in LDL cholesterol with Praluent is happening in my case ... 

As many of you know, an LDL cholesterol of 300+ and a total cholesterol of 400+ spells more than “trouble” for anyone (not just for an FH patient), especially one with a massive history of cardiovascular disease, open-heart surgery, multiple bypasses, aortic valve replacement and a heart attack ... 

I have always felt like a timed bomb but seeing these numbers again in my chart is scary. Also, given the fact that I am no longer 24 like I was in 1999, but almost 49 now ... this doubles the worries. 

For now, the cardiologist put me back on Lipitor (40mg instead of the 80 mg I was on when the liver values were going up) and I continue to take Ezetimibe and Praluent. We need to test for both the liver and the cholesterol in February and make a decision what to do then. 

He says “he has other options”: he can add the Bempedoic Acid back in for another drug, if the liver can take it - we’ve been testing for liver enzymes every month since September. The lab people and I are on a first-name basis now. We all know what each other has done for Thanksgiving and Christmas. I know that Bill, the nurse, has a step-mother-in-law with dementia and Michelle, the front-desk receptionist has a pitbull lady dog and that her birthday is in April, like mine ... 

The cardiologist is also wanting to start a new drug, Evkeeza - an infusion that works differently than any other drug I am on, but not before we stabilize the liver ... I have asked to try for this drug for years now, and if you have read here before, you know the stories ... 

I have always felt like a Guinea pig since I was 8 and they discovered my FH. And things sometimes never change, no matter how far science goes ... So here’s back in the spinny wheel for a while to try to get my numbers down again and keep my liver (and the rest of me) healthy, otherwise ... And as always: there are options. I can’t help but feel almost back at square one, though which is a bit of a let-down after 20+ years of doing so much better than this ... 

More to come, I am sure, in future posts. 

Much health to all of you!