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January 5, 2007

Cabergoline (Dostinex) and heart valve problems

As you know I take cabergoline (the generic form of Dostinex) twice a week. I take 1 mg on Tuesday and 1 mg on Sunday for a total of 2 mg; I used to take 1.5 mg on both days for a total of 3 mg per week. The high-end of the protocol recommends the 2 mg per week dose. So, at one point, I was taking 50% more than the high-end dose and I'm currently at the high-end dose.

Yesterday I stumbled across a story that stated Parkinson's drugs may lead to heart-valve problems. Cabergoline was mentioned as one of the problem drugs.

I read a bunch of the news articles Google offered up kept coming across this:

"In the first study, Italian researchers from the Istituti Clinici di Perfezionamento in Milan conducted an echocardiographic study of the prevalence of valvular abnormalities among 155 patients taking anti-Parkinson’s drugs and compared them to 90 control subjects. They report that the rate of serious valve regurgitation (irregular leaking of blood through faulty heart valves) was much higher in pergolide users (23 percent) and cabergoline users (29 percent) than in users of other Parkinson’s drugs (0 percent) or those not using any medication (6 percent)."


I read this a dozen times or more and was pretty sure it suggested I had a 29% chance of developing heart valve problems. Then I'd add that to the 23% for the other drug and come up with 52% of the people being treated problems for Parkinson's developing problems and I was sure if that was the case it would have raised a flag earlier.

So I'd look at it another way ... and reread it ... and decide it meant 23% and 29% *higher* than ... what? 0 + 6? ... then my head would ache and I'd get a pain in my chest that I was sure was a valve problem, except it was too much like the stress knot I used to get before I mellowed in my old age. Finally, I realized I was a far better Googler than interpreter and I shot off to Michael J Fox's site, which had an article from October 19, 2006

The article points out that there is a problem and reiterated what I'd read elsewhere -- that the problem is more likely to appear at higher doses and when the drugs are used for an extended period of time. You'll recall from above that I'm currently at the high end of the medicine-ingestion protocol. At least for hormone problems. I've been taking cabergoline for four years. From Mike's site I found:

The investigators point out that the mean daily dose was higher for cabergoline (3.8 mg) than for pergolide (1.4 mg) or pramipexole (1.7 mg).


Which is 13.3 times the amount I take weekly. (And, it must cost a fortune ... based on what I pay, the generic would run over $9,000 a month, assuming it is priced the same for Parkinson's as it is hormone problems).

I was starting to feel a little less depressed.

I did some more reading and found a couple of articles suggesting there is just the smallest chance of Parkinson's patience developing heart valve problems while taking any of the mentioned meds. So, there's a 29% chance or almost no chance of developing a problem.

The last thing I read, before shutting down the PC and turning to NewsRadio reruns was from the New York Times:

"The two new reports involve only Parkinson’s. The results should not be applied to patients who take Dostinex for the hormone disorder because they take far smaller doses of the drug than do patients with Parkinson’s, said Dr. David L. Kleinberg, a professor of medicine and director of the neuroendocrine unit at New York University’s medical school.

The hormone disorder affects tens of thousands of people in the United States, mostly women, said Dr. Shlomo Melmed, an endocrinologist and a senior vice president of Cedars-Sinai Medical Center in Los Angeles. Men can develop the disorder, and some need higher doses of Dostinex than do women, Dr. Melmed said, so those men should be monitored for heart valve problems. "



This was very exciting right up to the last line, which dropped it to 'pretty exciting.'

Prior to the late-evening research I'd made some calls to the medical professionals in my family -- calling my General Practitioner was out of the question as she relocated to Florida at the beginning of the year (I can only assume the thought of checking my prostate later this month was more than she could bear) -- to find out what it would take to detect a heart valve problem. It would seem that when the doc has got the stethoscope on you, that's one of the things he's listening for (that and Cool Jazz). I had my chest listened to in November (the heart sounded fine and the nurse said she was able to detect a bit of Miles Davis).


This morning at Red Herring I found the dumbed-down version of the first article I read:

One study found that 23 percent of the 64 patients taking pergolide and 29 percent of the 49 patients taking cabergoline had moderate to severe heart valve regurgitation, as compared to cidences of valve damage on a different Parkinson’s medication.



Red Herring has The Business of Technology as their tag-line, which made me wonder what something like this was doing on their site. Then I figured that since their target audience is technology-type guys ... IT people for one ... they'd be fully aware that we're not the smartest lot when it comes to non-computer things. As a public service to the IT community [Did you know that in some states IT people are not allowed to marry IT people -- typically only if both people are either (A) men or (B) women] they went the extra mile and put the once-confusing paragraph into something IT folk could understand.

I can't wait to see what MacWorld has to say about this.

Posted by delmer at January 5, 2007 7:34 AM

Comments

Dear Delmer,
You need to go to a cardiologist and get an echocardiogram.
Wish you the best.

Posted by: at February 6, 2007 4:21 AM