Below are the online places that I recommend for starting your research. While it may seem like overkill, I really believe that you should look at more than one place (at the very least MedlinePlus and PDR Health):
MedlinePlus I really love MedlinePlus, which is a service provided by the U.S. government (the National Library of Medicine and the National Institutes of Health). This site tends to include much more detailed information than I have seen anywhere else. However, you have to read each entry pretty carefully, as the authors have lumped information about interactions, contraindication and special instructions together under the heading of “What Special Precautions Should I Follow?” Still, this is the place to start.
PDR Health: PDR Health is the consumer site maintained by the publishers of Physician’s Desk Reference (the main drug resource that docs use – it’s the big red book that is sitting on their desk or in their smart phone), so it is probably the most up-to-date. This site has nice detailed information about how the drug should be taken, for instance, what you should do if you miss a dose, and if it should be taken with food (also mentioning if food will delay its effects).
Manufacturers' sites: I also like going to the manufacturer’s website for the prescribing information available to physicians. Usually typing the drug name into your search engine, such as Google or Yahoo, will get you to the site right away — most brand-name medications have their very own site. This is where you are most likely to see any serious warnings first. By looking at the “Full Prescribing Information,” you are seeing everything the drug company wants the doctor to know while avoiding language and images designed to convince you that you need this drug.
If you are REALLY interested: Go to PubMed (pubmed.gov will get you there), which is the free online database of medical journal abstracts run by the NIH, and type in your drug’s name into the search bar (try it alone and in combination with “multiple sclerosis”). Be prepared to see a large number of pretty obscure studies and scary case reports about the medication.
Real-Life Experiences With Medications
For my second (and probably the most important) step in my Internet research, I would recommend finding out what “the people” have to say. There are plenty of places to find out about the experiences of people who have tried these drugs. Here are a couple of my favorites:Revolution Health: Revolution Health's Drugs and Treatments site allows actual patients to write in and rate a drug in four areas (perceived effectiveness, tolerability, ease of use, would you recommend?) as well as write in an entry on the drug. Visit it and read what people have to say – it is fascinating.
Remember that people who have very positive or very negative experiences are more likely to take the time to write to such a site, but this still gives pretty interesting perspectives. To get to the relevant part, click on “Drugs and Treatments” in the top menu bar, then enter the name of your drug of interest in the search bar. Click on “Read all X ratings” under the “user ratings” column when it comes up. Play around on the site – there are ways to limit searches to your specific type of MS or symptom.
Askapatient database: Ask A Patient is also informative, focusing entirely on patient feedback about drugs. This site is a little more “homemade” than the Revolution Health one, mostly focusing on side effects, although people are asked to submit an overall rating for the drug. An interesting feature of this site is that some people provide e-mail addresses in case you want to ask a question directly.
DailyStrength: Daily Strength is also a patient rating site, where people can say if a drug is “working” or “not working.” People only post a tiny bit of information on each drug (sample entries for Copaxone include “waste of time” and “I still have site reactions but for the most part no major complaints”). The really neat thing about this site is that you can send a message to each person and most people have all of the drugs that they are taking posted under their profiles with comments. The site is a little confusing and requires a little “messing around” on it to get the hang of what is happening. However, there are also pretty interesting discussions going on in the forums.
Talk to actual people: Of course, this is a good thing to do if you have the opportunity. At the time that I was trying to make my decision about disease-modifying therapies, I didn’t know anyone else with MS, so surveying several people about their experiences was out of the question. However, if you are in a support group, you can ask for input, opinions and experiences around medications. Prepare yourself for a long session, as people usually love to talk about their medication experiences. Also, keep in mind that some people are very adamant about their choices and advice, so you may be asked about your decision (and having to defend it if your final choice differed from their advice).
