Choosing a disease-modifying therapy for multiple sclerosis can be a daunting task – to some people figuring out the plusses and minuses of the medicines for their situation is so complicated that they think this decision is best left to their doctor. I strongly believe that it should be a joint decision – this is a crucial part of sticking with your treatment and evaluating it objectively. Otherwise, you may end up feeling like a certain treatment option is something that “happened to you,” and become resentful about the particular drug, instead of hopeful.
Start With Your Doctor
Your doctor may have a very strong opinion about which therapy is right for you. While I am a big advocate of not being bullied, there are often very good reasons why a doctor might “insist” on a certain treatment strategy: maybe he had patients similar to you who did very well on a particular drug; or conversely failed to respond to a particular drug. He could also have had a cluster of people experiencing the same “rare” side effect from a certain drug. His reasons for one choice may be much more convincing than yours, especially if you were wavering between a couple of treatments and it was coming down to a decision based on a slightly smaller-gauge needle or a tiny statistical difference in annualized relapse rates.
If your doctor says the choice is entirely up to you, still ask what he thinks would be the best course for you. I often just ask, “If I was your sister, what would you recommend and why?” Some docs might not like that question, but it usually elicits an honest opinion.
Before further analysis, consider cost. Your treatment decision may be easier if your insurance covers one drug with a co-pay of $50 dollars per month versus another drug that is not covered and would cost $2,450 dollars each month. At that point, considerations of needle gauge go out the window for most of us. You may also be in a situation where one manufacturer may have a patient assistance program that you qualify for and the others don’t.
How to Get a Handle on Your Treatment Options
It helps to have a system to weed out the false options, to figure out what meds might work well together, and to make a decision about your approach. After completing the following steps, you will have much more information to make an educated decision:
• Create a form – On a piece of paper make the following columns: “Medication”, “What It’s For” (if it is for a disease-modifying therapy or a specific symptom), “Risks/Side Effects”, “Benefits”, “Cost”, and “Miscellaneous.” Fill in the columns as you conduct your information search.
• Look online – If you are comfortable with the Internet, start your search online. (Remember, the piles of colorful, glossy informational materials provided by the manufacturer’s money are accurate yet designed to convince people to use the featured drugs – not to give the “low down” on the treatment.) First, gather the objective facts. Go to MedlinePlus (www.medlineplus.gov) to learn the basics of the meds, such as how often to inject them, anticipated side effects, and efficacy. MS Focus also provides free literature on treatment options.
For the second (and probably most important) step in Internet research, I 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:
• Everyday Health – This allows actual people who are using different medications 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. Again, 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 the entries still provide 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 [drug name] ratings” under the “user ratings” column when it comes up.
• Ask a Patient – This informative database focuses entirely on patient feedback about drugs. Askapatient.com has a more “homemade” feel than the Revolution Health site, 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 – This is also a personal 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. Some really neat features of DailyStrength are 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. These sites vary in their activity and thoroughness around specific drugs. However, there are pretty interesting discussions going on in the forums.
• Talk to 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, so you may be asked about your decision (and find yourself in the position of defending it if your final choice differed from their advice.)
• Evaluate – I have been there. I know that we all have different things that we are looking for, or trying to avoid, when choosing a treatment. If the idea of an intramuscular injection makes you nauseated, scratch that drug off your list. If your insurance doesn’t cover a certain drug, don’t bother looking at it any further, unless there are other options for paying for it. There is no point in comparing statistical data on specific drugs if there is an insurmountable barrier to taking some of them. The final choice will be a combination of many factors, including your lifestyle and your doctor agreeing to your treatment plan.
• Decide – Now, go back and talk to your doctor. Tell your doctor your ideas about the medications. Tell him or her the main reasons for your choices – be specific. However, be prepared to compromise if your doctor has valid reasons for preferring a different treatment strategy.
Julie Stachowiak, Ph.D., is the writer for About.com Guide to Multiple Sclerosis. An epidemiologist, she lives with MS and is the author of the book Multiple Sclerosis Manifesto (Demos Medical Publishing, 2010.)
(Last reviewed 7/2010)