The Drugs

I wanted to write about all the drugs I have ever been on. But after searching through my medical records and digging through my memories, I realized that it’s close to impossible! Because I have seen so many doctors (the number could be anywhere between 50 and 500), each one came with his/ her own theory on how to deal with my FH. As I have said before, my numbers were incredibly high when the disease was first diagnosed. Not just elevated, but dangerously high, as they feared severe complications like a heart attack, or a stroke or that one of my vital organs would stop working properly just because my blood was too thick.

So, they had several approaches to this condition. First off, being in Romania, in the communist days if the 80’s, the resources were very limited. There were very few therapies (most of them foreign) existent in the country. The “drug of the day”, believed to be a “miracle drug” for cholesterol was Cholestyramine . And that was the first drug I was put on, around the age of 8 or so.

All I remember about it is that it was in powder format and it tasted horrible. The side effects were horrible, as well – lots of nausea, stomach aches and constipation. But the worst part about it was taking it. It was the first lesson I have learned about everything else that was to come: these drugs are no joke. They will interfere with your life and sometimes will make it impossible to be comfortable or even function. But maybe, just maybe, there was a chance that those numbers will go down. Maybe. Research was scarce, so there was never any certainty about it.

I was not on Cholestyramine for long (maybe a year or so), as it did virtually nothing for my numbers. I was on a strict diet, as well, at the time, but there were almost no changes in my cholesterol levels.

I will not give a thorough account of every drug I was on for 24 years of my life now, but I can provide a list of them. To understand why some of these medications are on my list, you’ll have to try to understand the path the doctors have taken to “treat” me. I am using quotes, because I am sure (as all of the FH patients know) that I am neither treated nor will I ever be. All the therapies do is trying to keep the disease under control, but they are not able to cure it. They never will be. Not with what we know now and what we have available. Not to my knowledge, anyhow.

So, over the years, the doctors tried to keep all the fractions of cholesterol down through their therapies – and this was their main goal. They came across one main hurdle: no drugs would work. For a long time (till I was 23), nothing they tried, no diet, no medicine would make a dent in my cholesterol levels. Till I found Lipitor, in 1998, I saw no improvement on my cholesterol levels – my levels were anywhere between 525 and 609 mg/dl during that time.

Another thing that happened during this time, was that because of my huge cholesterol, my body was getting worse. Aside from new symptoms that I developed because of the many side effects of the drugs (like severe acid reflux) I had more and more things that didn’t function properly: I started having chest pains (at the age of 16), an erratic heart beat, severe migraines, high blood pressure, which was not consistent. So, along with the cholesterol medications they were prescribing, they also prescribed a lot of other drugs to control all these other “new things”.

I have been very lucky, in the sense that doctors were always preparing me for the worst. I have also been very lucky in the sense that the worst has not happened yet. They predicted strokes and heart attacks early in my 20’s or 30’s. I have turned 36 yesterday, and – knock on wood – I have not spent one day in the hospital for such things. But this is the topic of another account.

Back to the list of medicines that I have been prescribed since 1983 – it follows bellow, and please feel free to google or wiki any of them. I have been mostly successful to find out a bit about each one and their side effects on the net alone and there is no point in repeating here what so many resources out there make available:

Before 1998: Asclerol, Aslovital, Cholestyramine, Trimeg, Peritol, Atenolol, Niacin; after 1998: Lipitor, Vitamin E, Zoocor, Niaspan, Zetia, Protonix, Crestor, Vytorin, Prilosec, Fish Oil, Welchol, Trilipix, Bystolic, Nitroglycerin, Vitamin D.

1998 was the year I moved to the US. And that is also the year when the course of the therapies had changed, and the access to newer, better, more powerful drugs had opened.

You will notice that there are a lot of drugs here that are very similar (like all the statins: Lipitor, Zoocor, Vytorin and Crestor). The reason for this is that even Lipitor stopped working for me, after a while. You always have to remember that FH is a genetic disease. So, unless you change something about your genetic makeup, this affliction cannot be eradicated. You can “trick” your liver to behave for a while, but eventually, the body will develop immunity to any drug and will do as it’s programmed at birth. So, when Lipitor stopped working, they tried other statins that were on the market. With no result. Every time they tried anything else but Lipitor, my body would not “listen” and my cholesterol would jump by 100 points, or more.

So, the alternate course was (and it is a school of thought in treating this particular kind of hypercholesterolemia) to add more drugs to the one that initially worked (in my case, Lipitor). These added drugs usually work in different ways that Lipitor. Thus, they added, first Zetia. And then, when Lipitor + Zetia stopped working efficiently as well, they added Welchol on top of them. The point at which I am now, it’s believed that these three drugs are the best combination for my cholesterol levels to stay around 314 mg/dl (total).

As recently as last fall, they also tried to add Trilipix, which is a newer drug (not much research has been done), but I did not tolerate it well, so I stopped taking it. Because my levels have never been “normal”, every time there is a new drug/ therapy on the market, my doctors want me to try it – they always shoot for what’s known to be a “safe level” of cholesterol. So, I have been pretty much everyone’s first patient to try any new drug therapy for cholesterol. More often than not, I either cannot take it, because of the side effects, or it does nothing for me, so they stop it. Zetia and Welchol have stayed, because I have seen results with them, and I can “live” with the side effects, somewhat.

I have seen my levels drop at 282 mg/dl, when I was taking Welchol every day, four times a day. The pain from gas and constipation that I was experiencing, though, were absolutely unbearable! I would wake up in the middle of the night in hot sweats, crying from abdominal pain. I found an account online of a patient who described the symptoms of Welchol perfectly: he said “it feels like someone hit you with a baseball bat straight in the stomach”. It’s very accurate. So, now, I take Welchol about twice a week.

I will write about my own approach to this disease, because I think it’s important to notice that with any sickness there are three forces that govern it: your doctors, nature (or God), and yourself. And as far as I am concerned, I have called off therapies because I always vote for quality of life rather than quantity of life. So, sometimes, even if the drugs were seemingly working, I said “no”, because I wanted to live my life first, albeit short, maybe, and then make the numbers fall.

Aside from the debilitating effects of Welchol, there have been many other side effects I have either learned to live with or pushed aside with a cringe. Not before trying for months to allow myself to get used to them. Some of the most notable are the side effects of Niacin. The flashes I experienced, the lightheadedness and sharp tingles (or burning sensations) all over my body make me feel like I am literally going to die. Although Niacin is a natural product, I have not been able to take it, because I cannot handle the flares, not even for several minutes, twice a day.

I have learned to live with the effects of Zetia, though – this medicine works by absorbing all the cholesterol that comes from your diet inside your intestine, and eliminating it through your digestive tract. Thus, the cholesterol never goes into your blood stream. When I occasionally eat shrimp, for instance, which has a high quantity of cholesterol, my stomach is in knots because Zetia is probably not happy with that much fat. Zetia also gives you a decent amount of gas, and you always have to feel bloated and puffy … It’s part of the “lifestyle” now, unfortunately. I have always learned how to live with the nauseating sensation you have from eating any fat at all, while on Zetia. However, I know two people in my own family who stopped taking it, because the side effects were too much.

One of my least favorite consequences of all these drugs or of this disease is that it leads you to take more drugs. I am on beta blockers for my heart, on acid reducers (not every day) for my acid reflux, and on OTC migraine medicine for my headaches, when they happen. I will address all my diagnoses in detail elsewhere, but my carotid arteries are so clogged with cholesterol and plaque that my brain doesn’t get enough oxygen at times. So, my headaches are horrible. I also take nitroglycerin, for the occasional chest pain, when it is too severe.

I have always looked into natural therapies, but they are not as effective as the drugs, unfortunately. Years ago, I have also contacted Dr. Dean Ornish’s group who are proving that you can prevent and even reverse severe coronary heart disease through lifestyle changes and healthy eating alone, drug free. The response from them was that given my incredibly high numbers, I will have to stay on the drug therapy that works for me, AND also maintain an active, healthy life. But the drugs are not optional in my case, they said.

I want to note that I am not running to the bottle every time I have discomfort anywhere in my body. For years now, I have made friends with pain. There is no day in my life that something doesn’t hurt (my heart, my chest, my liver, my stomach, my esophagus, etc), but 9 times out of 10, I just take my daily drugs, and move on. Live through it. I have learned to not make pain the priority, but just to treat it as part of my life.

I am, however, speaking about its presence to my doctors, and never ignoring it. I think it’s important for them to know what hurts, how often, how bad, so they can address it with more tests. And this is how I found out about many other things that have been deteriorating. But I don’t take drugs for it all.

My daily therapy of drugs today, in 2011, includes these: Lipitor (80 mg), Zetia (10 mg), Welchol (2 625 mg pills every 2-3 days), Atenolol (100 mg), Fish Oil (2000-3000 IU), Vitamin D (800 mg), Aspirin (Bayer – 325 mg). I stopped taking Vitamin E a while ago, when a new study found out that it’s really not helping heart disease patients. I am taking Vitamin D because I have a deficiency of it. My Vitamin E levels are fine.

I made this post way longer than it needed to be and yet found it impossible to cover everything I know about the drugs that I have been prescribed. But I am also sure there will be more talk about drugs to come. I hope someone finds it helpful and they can somehow relate to it, or at least to some of it.

All of our journeys are unique, of course, as unique as our own bodies. But we all share the same knowledge doctors have, and the same available therapies out there. So, maybe, some points are of interest to some of you.