Happy New Year, everyone!
I wish and sincerely hope that you are all having a good year so far and that 2025 will bring you everything you set out to achieve - healthwise, and otherwise.
To be honest, they always tell us that “less is more”, don’t they? I have always struggled with this saying and I have always believed it’s such a pile of nonsense. But for the case I am about to talk about here, less is indeed more. Unfortunately. Less drug means more cholesterol.
My journey with Evkeeza has been great so far, at least from a standpoint of what my cholesterol levels have been - levels so close to my target of 70 mg/dl and even lower. In November, my LDL level was 67 mg/dl which is lower than my target. This is stuff which dreams and fantasies have been made of, for me. I never in 42 years did I dream that I would come anywhere close to my target (my “natural” LDL would be somewhere around 475 mg/dl). But there we are. Or rather, there we were in November.
In December, at my last cardiology appointment, the doctor decided to reduce some of the other medication I have been on for years (https://livingwithfh.blogspot.com/2024/12/the-importance-of-advocacy.html) on the account that Evkeeza does more than it’s been expected to do. So, since November, I have stopped taking Ezetimibe and I have cut the Atorvastatin in half (40 mg, instead of the 80mg that I have taken for 20+ years).
But at my January Evkeeza appointment, the numbers didn’t look so good anymore, as you can tell below. The LDL more than doubled (since November), to 142 mg/dl.
Click on the picture for a higher view
(insert your losing move jingle here)
I typically get my infusions on Fridays, because I am usually tired the following day and I want to have the weekend to get some rest afterwards. So, Friday evening when the numbers were posted on MyChart, was followed by two non-working days where I could not reach my doctor.
I made the decision on my own to double my Atorvastatin back up that Friday night. And I did. First thing on Monday, I emailed my cardiologist and told him that given the latest numbers, I would like to go back to my “usual” 80 mg of statin. He replied that he too was very disappointed to see the numbers creep up and that his advice is too, to double the Lipitor back up.
So, here we g(r)o(w) again back to “the maximum tolerated (and allowed) statin dosage.
It’s a guessing and a trial-and-error kinda game - managing this disease. I wish I can tell you that after 42 years of managing HoFH I got a handle on it and I have it under control, but I don’t. Dosage adjustments, trying new medication, trying combining new and old meds all the time, getting tested and then going back to square one, or making 2 steps in the right direction and one step back - it is all part of the lifestyle.
The target is always: keep an eye on the numbers and adjust what you can regularly. That is all. I have not gotten discouraged because I am used to meds not working for me. My goal is to try the most of what I can try and tolerate and I have access to and just keep at it. The rest is up to whatever my body decides to do. I do my part. The rest is left to science and luck.
For most of my life, I was not anywhere near “the target”. So, not hitting that is not proof of failure to me. Even with a small dip in the numbers, I am happy that it happened and I am always moving forward. I have learned that there are always things to try and always options. And when I hit a wall and there are none, all I have had to do was to wait for a few months or years and something else will pop up. And if I am really lucky, I might still be around to take advantage of it.
I am just happy and have been lucky that there is research out there to always seek more ways for us to control this.
Looking forward, hopefully, to the next blood test which will be sometime in February and which might show a more hopeful story.
I wish you smooth journeys, full of silver linings out there! And make it a great 2025!
