Report Arimidex Side Effects!

It’s not hard to do. Just go to http://www.fda.gov/medwatch/report/consumer/consumer.htm

and follow the report instructions. We need our voices heard! Too many health professionals have been dismissing these side effects, and I’ve just heard from too many miserable women to believe that it’s all in our heads. I know some of these women personally, so it’s not just coming from this blog.

Arimidex Feedback

The website in questions is http://www.askapatient.com/viewrating.asp?drug=20541&name=ARIMIDEX I have also gone to http://askapatient.com to look for patient reactions to other drugs, such as a particular statin, Tamoxafin, and Prevacid. Since I registered my own problems, I have heard from about ten women who have suffered similar side effects to Arimidex–joint problems and aching so severe that one can hardly get out of bed, much less function in life. I didn’t realize that I had registered my email address and was contactable. The women taking Arimidex and wishing they weren’t were agonizing between quality and quantity of life.

Believe it or not, I have had health professionals deny any reports of Arimidex side-effects. A nurse in a breast cancer surgeon’s office declared that she had never heard of any problems with Arimidex. One of my doctors (we get lots of docs in this adventure) emphatically insisted I continue taking it, while another emphatically insisted I quit immediately after viewing my poor bone density test, which both doctors had seen.

I did a lot of research before going off Arimidex and refusing, as well, Tamoxafin. I looked at the biggest study involving over 20,000 participants–I’ll have to look it up again and will report the results–and found that the bottom line was not nearly as scary as the way the statistics were interpreted.

The medical news uses statistics for scare purposes, and to make the news look newsier. Here’s what I discovered. Let’s consider a theoretical study of some new Big Pharma medication which proports to prevent a breast cancer recurrance, say 20,000 women. If we’re lucky, there will be a specific age range, so let’s say these women are between ages 40 and 65. 10,000 are on the med, 10,000 are taking a placebo. Let’s say that after 10 years, those on the med suffer 300, or about 3%, of the women suffer a recurrance, and 600, or about 6% of the women on the placebo suffer a recurrance. There are several ways to report these findings:

 One way to interpret these figures is to say that, even though there is only a 3% greater risk to women on the placebo, it is also correct to say that women on the placebo suffered twice the recurrances of those taking the new medication. This statement would be true no matter how many people were in the study, 100 or 10,000 or, as in one important study, 40,000. This  important discovery I learned while trying to explain how odds and risk work in my book about the measures we have to deal with in American life, Necessary Numbers. The subject was so complex, however, that I had to drop that chapter.

There is a good reason why many very very smart Ph.D. candidates in the sciences frequently flunk statistics. It’s tricky stuff, and before I listen to scare news or scare talk from doctors, who probably don’t really understand statistics either and are courted by gorgeous sales reps who sashay into their offices without waiting–how often have you seem this?–look for what are called Landmark Studies, and study the bottom line: How many in the study? Does the selection of participants really apply to you? How narrow was the study? Was it a double-blind study? Who conducted the study?  What are the real result in numbers, not risk percentages. 

To hedge your bets at any cost is a choice. I am not recommending that anyone live dangerously…I just think that believing in your choices and living each day with as much happiness as possible is right up there with the great cures of  our time, but how do you measure that?

Arimidex Side Effects

And here I thought my struggle was over–that the difficult, gambling decisions had been made. Home free, worry free, until my next mammogram six months down the road. But not. (Did I mention that I passed my first check-up and mammogram in June? Now THAT was a relief!)

After my body froze up and I felt like a corpse, every joint and even my muscles aching all day, I decided that I would take my chances, give up the Arimidex (which, I might add, costs $225 a month!), and instead, after my body gets cleared and back normal (if it ever does), start taking Fosomax. It turns out that Arimidex commonly causes joint and muscle pain and also can cause osteoporosis. My bone density test showed that I already have osteoporisis in my spine and ribs, and so I’ve decided to go for the Fosomax cure.

Of course, my doctor would also like me to go on a statin for high cholesterol and one of those anti-GERD drugs so the Fosomax won’t cause acid reflux problems, and so it goes.

I feel like what my friend Tom calls an “organ recital.” I think what I’m irritable about, though, is having to re-deal with all this stuff. It’s all a gamble: Do I want a long miserable life or a short happy life? Or I might luck out and have a long happy life, who knows? The odds are better that I won’t suffer a recurrence than that I will, but they aren’t terrific. Still, the odds of actually dying of breast cancer are pretty low no matter what I choose.

So although I am not as mobile as I was a few months ago, and feel as if my body is aging years instead of months, I can still function independently. I can still live each day and find much to enjoy. As will be evident in my next few entries.

Surprising Side-effects

I’ve been on Arimidex for six months now, and I feel as if I am a hundred years old. Every joint aches–every finger, toe, shoulder, arm, leg, foot and neck joint hurts all day. It’s especially bad when I’m inactive for an hour or more–I can hardly get out of bed in the morning.

 So I’m having to decide whether quality of life is worth the risk of reducing the quantity. I’ve still not been able to find a study that zeroes in on my age group, diagnosis, and treatment, analyzing the risks of not taking anything vs. one of these two five-year daily chemotherapies.

I thought I was out of the woods. I healed so well from all my treatments so far, but this one I can’t live with. I’ve read similar complaints from other women taking arimidex.