Is there a Yelp for Medications and should you be using it?

The skeptical cardiologist recently prescribed ezetimibe to a patient who was leery of taking statin drugs for her elevated cholesterol. In the past she had taken red yeast rice in the belief that this was a safe and natural way to lower her cholesterol. I told her that I had looked into and researched red yeast rice (and wrote about it here), and that it was neither safe nor effective.

When I saw her back at our next office visit, she informed me that she had done her own research. She had gone on the internet and Googled ezetimibe and based on its “reviews” she felt it was an unsafe and dangerous drug.

It occurred to me at that point that patients like Ms X may actually believe that they can get reliable information on drug side effects and efficacy by going to a website where patients leave reviews on drugs they have taken.

Yelp For Medications

Such sites would be the equivalent of Yelp, which the wife of the skeptical cardiologist utilizes extensively to determine which restaurants we should patronize.

Lo and behold, if one Googles “reviews Zetia” a whole host of websites pop up offering you the opinions of random individuals on the drug.

On Everday Health Zetia gets 2 stars from 34 reviews with the most recent review being quite negative;

I hadRated Zetia for Rheumatoid Arthritis Report BEWARE. My husband took Zetia along with stantin, Crestor. Within a week, his leg muscles inflamed and shut down his kidneys and liver. He has been in the hospital for over a month and his condition has not improved. He’s on dialysis and can not walk. He is an alcoholic and his liver failed with Zetia.

The 234 reviews of Zetia on WebMD (another site I don’t recommend) are also pretty negative. Here’s a typical one;

Low dose of Zetia ….After just first days had severe diarrhea, halfed the dose. After a month I started seeing flashes in my right eye. Lots of eye fatigue, now a lot of ‘floaters’ in my right eye. Got checked by eye doctor to make sure it wasn’t optical nerve damage. Scarey. Coincidence? Don’t think so. 

Limitations of The Yelp Concept In Assessing Medications

I empathize with and totally respect my patient’s desire to do her own independent research on the potential side effects of a drug that she will be putting in her body.

However, the Yelp approach just does not work well for medications.

There are three problems with relying on these kinds of patient-reported medication side effects.

The first is that the patients who leave comments on these sites are not representative of the overall pool of patients receiving the drug. Patients who feel they have been harmed in some significant way are much more likely to be motivated to spend the time recording what happened to them than are the individuals who felt fine after taking the drug.

There were 4 million prescriptions for ezetimibe written in 2015 and the number of patients leaving comments on these patient-review websites at most number in the hundreds. Thus, 99.9% of those taking ezetimibe are being silent, most likely because they are doing fine with the drug.

Secondly, most of the side effects reported by patients after taking ezetimibe occur at about the same frequency in those who take a placebo.

Although the package insert for ezetimibe lists various “common” side effects of the drug (such as diarrhea and upper respiratory infection), this table from the same package insert shows that such ailments are about as common in the group taking placebo.

The manufacturer, following FDA guidelines, reports out adverse reactions that are more common than 2% and numerically greater than placebo, but these are not necessarily significant differences.

Thus, we see that 4.1% of patients taking Zetia had diarrhea, but also that 3.7% of patients taking placebo had diarrhea.

If you take any group of several thousand individuals and follow them for a couple of months, probably 4% will get diarrhea whether or not they are taking ezetimibe.

The Nocebo Effect

Finally, we have to take into account the nocebo effect. The opposite of the placebo effect, in which inert substances make patients feel better, the nocebo effect makes patients who believe a drug will have side effects much more likely to experience those side effects.

The nocebo effect is quite common in patients who have read very negative comments on the internet about statin side effects. It is clear to me that this statin-related nocebo effect has also influenced patients taking non-statin cholesterol lowering medications like ezetimibe.

This is such an important factor in how patient’s tolerate ezetimibe that I spend considerable time during office visits emphasizing that ezetimibe works in a totally different way than statins, and is not associated with muscle aches/myalgias.

Alas, my patient has chosen to rely on the Yelp approach to deciding which medications to take. I’ve given her the best information I could on the safety and efficacy of ezetimibe based on my years of prescribing it and studying it. At this point it is her decision to make, and I accept it and we move forward managing her cardiovascular disease with the other tools in my toolkit.

Unlike an inaccurate restaurant review, however, a single individual describing inaccurately horrific side effects of a medication has the potential to steer thousands of patients away from potentially life-saving therapy.

Skeptically Yours,

-ACP

11 thoughts on “Is there a Yelp for Medications and should you be using it?”

  1. I know you can’t give me personal advice since you don’t have access to my medical record, but I am curious as to when you stop a patient’s statin drug. I’ve been taking 20mg/day of lovastatin for years but the past 2 years have seen much improvement in stats due to lifestyle changes. I’m due for another test soon and would like to know if it might be reasonable to ask my doctor to either reduce the dosage or stop it altogether. Last year’s numbers were total cholesterol 173, triglyceride 54, HDL 79, and LDL 83. I’m sure age and other health conditions are factors. Is it harmful to the patient to take a statin if cholesterol stats are normal or very good? Is one more likely to experience side effects under such circumstances? I realize there is always a tradeoff between the expected and possible positive and negative effects of a drug as well as drug interactions to consider.

    1. It’s definitely reasonable to ask if stopping or reducing the statin is appropriate given a substantial improvement in lifestyle. I’ve discussed this a few times in different posts but basically I do as much deprescribing as I do prescribing and every visit with every patient I review whether the meds they are on are needed and at the right dosage.
      On the other hand I’ve written about the situations where I recommend a statin to patients with “normal” , non-elevated cholesterol levels.

  2. As a pharmacist, the Google School of Medicine and Pharmacology has made me want to pull my hair out. Anecdotal observations are not good science for the reasons you noted above. I plead with clientele to consult their pharmacist with medication concerns.

  3. Here is the other blogger that I like to follow. Follow his “read more of this post” to read his position and please let me know what you think. A pharmacist viewpoint would be nice. Mom just got back home from hospital. Gram still in ICU.  All major issues: urinary track infection, bilateral pneumonia,. afib, c-diff.  She is still not eating well.  She is getting constant drip of fluids etc but is getting more in that kidneys are putting out, so she is having difficulties there, too. OK.  Let me know what you think about “the eternal skeptic” please.  Oh, and love to all and a good nite with pleasant dreams!

      

  4. I’m guessing you feel the need to reduce this woman’s “cholesterol” to a certain number-range… thus preserving her from future cardiac problems.
    But, and without being overtly sexist, this may be another example of drug efficacy in males being assumed to be the same in us females.
    It’s not, surprise-Surprise!
    Indeed, since you make the point of ‘googling’ to be be a Suspect Method of discovering Truth, perhaps the blowtorch needs to be turned towards statin advertising, and here’s a link to a stury published in a Legal Journal which points out failings of their ‘enthusiasm’

    September 5, 2008 Journal of Empirical Legal Studies.
    http://www.thedoctorwillseeyounow.com/content/womens_health/art2137.html

    And , this statement in the Abstract is clear enough:-

    “The analyses do not support (1) statin use to reduce heart attacks in women based on extrapolation from men, or (2) approving or advertising statins as reducing heart attacks without qualification in a population that includes many women. The legal analysis raises the question of whether Lipitor’s advertisements, which omit that Lipitor’s clinical trial found slight increased risk for women,”

    I am of a ….’Certain Age’ and I no longer take statins. But my Cardiologist is more concerned with my A1c / T2DM status.

    Besides, if it’s good enough for SWMBO to regulate your feasting via the internet, surely it’s ok for medical patrons to garner information therefrom?
    😉

    1. Janet,
      Thanks for your comments. Some thoughts…
      1. When I start a drug that effects cholesterol my goal is to lower the patients risk of heart attack, CV death or stroke.
      2. More recent studies than the 10 year old one you quoted include many more women and by 2013 meta-analyses were concluding statin had similar benefits in women and men (https://www.sciencedirect.com/science/article/pii/S0735109711049898)
      3. Not sure what SWMBO is but I stand by my point in the post that a bad restaurant recommendation is substantially less significant than a bad medical recommendation.

  5. Its interesting to hear people’s methodologies on how they make decisions. On one hand, its hard to dispute how someone feels, something which I have gleaned you appreciate and take into account. I think many drs. don’t, so I think you should be commended on that. On the other hand when looking at what these drugs do, I think many people don’t understand the mechanisms (NPC1L1 inhibition vs HMGCOA reductase inhibition) or the pleiotropic effects as well. As someone with a science background in chemistry, I often find most people don’t care or want to understand the science. Do you find your patients to be interested in the science aspect of it? Do you think you are a good teacher when it comes to explaining the relative risk or the pragmatics for each individual? Do you have time in your appointments to educate or get into the science of how these drugs work? Btw, I am a big fan of zetia, I think coupled with a low dose statin it can do amazing things with LDL-P, (not to be confused with LDL-C). For those with myalgia issues as a byproduct of statins, it can be very helpful in attaining LDL-P goals (quanitified sterol exposure via particles).

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.