Perception, Reputation, & Information: How Do We Decide about Dangerous Drugs?

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Widespread mis-information on methotrexate

toy racetrackIn an article in The Rheumatologist, Dr. Bruce Cronstein writes about his frustration with misinformation online about methotrexate. He wonders aloud whether there is some intentional campaign against it. I guess many websites paint an ominous picture of the sunny yellow liquid – or pills – we love to hate. There are warnings of severe drug interactions with NSAIDs or Biologics and a general depiction of it as an extremely hazardous drug.

Cronstein: “Rheumatologists have been particularly victimized by the Web-based distortion of knowledge about our most oft-used drug.” True: if you read good rheumatology articles, methotrexate is called the “mainstay,” “gold standard,” and “background therapy” for the treatment of most Rheumatoid Arthritis. When asked, I usually tell patients that rheumatologists like to prescribe methotrexate because it helps the most with the least permanent side effects of the disease modifying drug alternatives.

If I have any disagreement at all with Dr. Cronstein, it would be that the rheumatologists are the ones who are “particularly victimized.” Perhaps, as I think about it now, it is also the patients. Most days, I deal with the concerns of patients confused or frightened by the very thing that frustrates him: “Most textbooks of pharmacology and even medicine simply copy the discussion of methotrexate toxicity and drug interactions from the sections devoted to chemotherapeutic uses of the drug at doses that are 10- to 100-fold higher than those used to treat rheumatoid arthritis.”

Reputation of a drug affects patients’ perception of safety

Last week, we discussed the new restrictions from the FDA on acetaminophen (Tylenol). Many think of acetaminophen as “safe” because it has been available over the counter for so many years and it’s included in so many pharmaceuticals, both prescription and non-prescription. It looks like the FDA has concluded that many patients don’t know to include their total acetaminophen doses when they calculate the total load that they place on their liver by medicine or alcohol – perhaps because they are too comfortable with it.

Whether or not it’s accurate, complete, or balanced, the “information” that patients receive about a drug impacts their perception of it. Perceptions have a significant impact on whether patients are comfortable with a drug. As Dr. Cronstein says, most of the information about methotrexate online is negative and incomplete. One reason that I built this site was to make accurate information more available to patients, including methotrexate information. Some doctors do send patients to read it. In a similar discussion, one commented, “Kelly has done a wonderful job in presenting a balanced picture” about methotrexate.

Yesterday, a regular contributor to our Facebook group posted some warnings about Voltaren (diclofenac), a topical NSAID used by many Rheumatoid Arthritis patients. Voltaren is actually labeled for use in osteoarthritis (OA) which may be why no rheumatologist ever prescribed it for me. My pain specialist actually found it effective for his own tennis elbow and wanted me to try it. He said, “It can’t hurt you. You can take a bath in it. The medicine is not absorbed into the bloodstream.” In the car, I marveled to my daughter, “How can that be?” Soon, I realized that the “bath” comment is very common with regard topical diclofenac. I heard some other patients and my prescribing physician say that they use it liberally, but I did not do any research since I don’t use it regularly.

However, according to the information my Facebook friend posted from the Voltaren website, we ought to be more cautious about side effects. Just because it’s topical or a friend or doctor is comfortable with it does not mean that something is “safe.”

Information can raise our comfort level with dangerous drugs

I wonder about patients who read the scary web pages on methotrexate and then write to me that they refuse to try this drug. Many of them take other drugs that may be at least as dangerous but have a better reputation such as NSAIDs, prednisone or birth control pills. Reading the list of possible adverse effects of these drugs, the lists seem comparable to low-dose methotrexate. However, there is a higher comfort level with them since they have been used regularly for so long by so many people.

Patients are always better off being informed and able to make choices based on facts. We must weigh risks and benefits with every medicine we take, even familiar ones like Tylenol. We need accurate information since some drugs may be more or less dangerous than their reputation.

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Kelly Young. All rights reserved.

This entry was posted on Friday, February 4th, 2011 at 6:00 am and is filed under RA Education, Reality Check. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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