Milestone: Breakthrough Drug Approved

I think my family has been dreaming of a day where they can breathe easy and tell themselves "there is something for our child to treat this disease with" since I was 6. That's 34 years ago, for those who are counting. Well, their day might already have come!

 
As you already know by now, the PCSK9 inhibitor drug to treat cholesterol and potentially reduce the risk for atherosclerosis, heart disease and strokes has been approved by the FDA: as stated in this article. 

Europe had approved it the week before.

I am personally excited about the opportunities out there, but although I have access to this drug therapy here in my state, and although I would qualify for it with no problem, I am actually putting off taking it. At $8000-$10,000/ yearly, Cost is one concern, for sure, but the biggest reason is just wanting to wait for a couple of years to see if the results are really what's expected of it, and waiting to see if more long term side effects will be revealed with time. 

I just pray and hope that I will have the luxury of waiting.

All This Info and What To Do With It?

Well, since December, I have eaten mostly vegan food. I say “mostly” because sometimes, I am forced by external constraints (visiting friends I don’t want to justify myself to or just having no other options for food when traveling) to forego my strict diet.

I have tried to eat little to no oils, either, but there are still vegetable fats in the vegan foods I eat and they do freak my liver out, and they don’t get processed. They get in my blood stream and wreak havoc in my arteries.  

I was curious to see if my numbers have stayed dramatically low (for me), like they were in March. But I was not so lucky to keep the trend going.

Here’s a side by side view of my lipid panel in March and today, respectively:

The diet was the same then and now. The only two things that for sure are different are:

-          In March, they took the tests while I was fasting; this time, I was not;

-          In March, I was taking Zetia about 2-3 times a week in conjunction to Lipitor; right now, I was taking no Zetia at all.  

My new cardiologist is adamant that I should not stop Zetia so he put me back on it. It does make the Lipitor work better and this definitely has shown in tests before.

Whatever the reasons are, though, for the increase in numbers, as you can imagine, I am not happy. Not that I would expect diet adjustments to make a really tremendous difference anymore (as you know, diet is irrelevant for us, FH folks), but I was at least hoping that the numbers can stay where they were in March, for a long, long while. But, as life with this disease would teach you – the numbers will always consistently shock you.

As always, I pay attention but I try not to dwell on the grim figures here. I will continue the diet, which, finally, has become a very comfortable lifestyle for me, and I will continue my medication, bringing back the Zetia, of course.

On another note, my new cardiologist is the head of the PCSK9 inhibitor drug research for my state , and he is pushing me persistently to be part of the research, or to be his second only patient to get the drug, if it gets approved this week, in fact. Although I do want, with all my heart, to have my numbers under control and at a normal level (not just “normal, for me”), although I do want to avoid any kind of heart procedure or surgery in the near future, I am still very cautious of these new drugs. I know they promise a lot, but I still would like them to have a bit more research and findings under their name before I “embrace” them. So, for now, I will hold off taking this medicine.

This kind of decision is commonplace for people with rare diseases. We are faced with this every day, perhaps – some amount of research, big promises, and lots of hope. And every single time, with every single patient, it is a singular decision, and a personal one. There is no judgement to be placed on our individual decisions. There is staying informed, engaged, and not feeling guilty about that resolution we choose. It is your life, your health, your well-being. No one, no doctor or medical study can ever validate that.

Maybe it’s the biggest mistake I make and it could cost my life, but at this point, with the information I know and the mind frame I am in, this is the decision I am sticking with. For now. This is no advice, either. It’s just my opinion, regarding what happens to the body that hosts my mind and soul. Today.