Although my cardiologist will tell you that I know more about cholesterol than he does, this is truly not a rhetorical question. I am really looking for the answer to it.
After 36 years of watching these numbers, I am as puzzled by my cholesterol numbers as ever. The good news is – I am still at the better end of where the numbers need to be. But the bad news is, although I have seen some normal numbers while on my current regimen of drugs, the current numbers are not normal anymore, and they have not been this year.
If you have read the previous entry (https://livingwithfh.blogspot.com/2019/05/fh-is-pain-in-butt-literally.html), you know that my numbers were very low at some point last year (around September) and then they started inching back up. My cardiologist has exhausted all the guesses he has had so far (I think!) as to why this happened, since I have not made one change in my lifestyle nor medication.
We have exhausted guessing about the quality of the drugs maybe going down, or the fact that my body might be resistant to Praluent all of a sudden (maybe to the other drugs, too?!) – we still don’t have an answer to this last theory. As of late, he was trying to test the idea that maybe I was not injecting my Praluent properly, so for the past three shots (this is six weeks), he had me come into the clinic and let his nurse inject it “the correct way”. Which I did. Her correct day was not much different than mine: we both inject in the thigh, alternating thighs every two weeks. The numbers, as you can see below, have dropped a little, but not enough to really consider them being in a new range.
The guessing continues, and at this point this is where we are: guessing, or wondering, still.
The next step is to meet with him next week and try to understand what the immediate future plans hold. Some things we talked about were:
- Wait it out and do nothing. Continue with the current regimen and just keep the numbers as low as possible; they are still some of the lowest ever, so this is good.
- Another option is to switch to Repatha. Maybe I respond better to it than to Praluent?!
Maybe we have given Praluent a fighting chance and this is the best it can do for me.
At this point, this last option makes me angry and deflated, because this means a renewed battle with the insurance company to get Repatha approved, when I thought I was pretty much in the “safe zone” with the Praluent, since they have been approving it for three years. Sigh, again … Also, I am not sure what this would mean for my bottom line: for now, Praluent is clearly their preferred drug, because I have a $0 copay for it. Not sure how much Repatha would be.
I will wait for the appointment with the cardiologist next week to see where we go from here. But so far, so not so very good, I guess, you can say. I keep reading to see if others experience this “plateau” stage at all, and whether there is anything in the current research about how Praluent works (or stops working or changes the way it works) in the long run. So far, researching and staying tuned is about all I can do.
Much health, everyone! And many answered questions to all!
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Blog Post by A.W.
About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily - from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.