Taking Tecfidera – Survey results
Back in December, MSology posted an article with the latest news on Tecfidera, an oral medication that many people take for their MS. The article included some tips on taking Tecfidera to help prevent some of the side effects of the drug, such as flushing and stomach upset. We also surveyed people taking the drug to see what they thought.
About 400 people read the article and 48 Canadians completed the survey. Respondents were mostly female (96%), and somewhat older (29% over age 50; 52% aged 41-50 years), a group that reflects MSology readers rather than the general MS population. All of the respondents had taken Tecfidera: 81% were currently taking it, and 19% had been on it but had stopped. The amount of time on Tecfidera was generally fewer than two years (23%), or 2 to 5 years (73%).
Tecfidera can be used as a first-choice drug, or may be prescribed after a person has been on another MS therapy (such as one of the injectables). Respondents were fairly evenly divided: 40% said that Tecfidera was their first MS drug, and 60% had previously been on an injectable (most often after one or two injectables).
Why did people go on Tecfidera? One group (35%), which generally comprised people who had switched off an injectable, said they wanted to take pills rather than injections, and a few people (5%) thought an oral medication would be more convenient. But the largest group (46%) said they opted for Tecfidera because of its effectiveness in controlling their MS; a majority of these people had been taking something else and it hadn’t done the job.
The survey also asked people to write what they liked and disliked about the drug. As you might expect, many people liked taking pills, thought pills were easy to take and more convenient, and liked that they no longer needed needles. Some people commented that their MS seemed to be well-controlled with Tecfidera, said they felt better than they did before, and they weren’t troubled by side effects.
All medications have side effects and Tecfidera is no exception. The most common problems are flushing (hot, red-faced prickly feeling) and stomach upset (nausea, diarrhea). Serious side effects are uncommon; there have been a few cases reported of PML (progressive multifocal leukoencephalopathy, an infection of the brain), but these are very rare.
Most people flagged side effects as the thing they most disliked about Tecfidera. The most common problem was flushing, mentioned in one-third of the comments. One person said that flushing made it hard to keep her colleagues from finding out about her MS. Other complaints were about side effects in general (15%), stomach upset (9%), and having to take it twice a day (9%). A few people expressed concerns about PML (7%), and some felt that the drug hadn’t worked for them (7%). However, 11% said there was nothing they disliked about the drug.
Flushing appeared to be the main issue with most people. It was cited by many as the side effect that was the easiest to tolerate, and by many as the side effect that was hardest to tolerate.
Most people taking Tecfidera said they were satisfied with their choice of therapy, and were doing well. When asked to rate their wellness, 10% said it was excellent, 42% said it was very good, 35% said it was adequate, and 13% said it was poor or very bad.
The article accompanying the survey included a number of tips for preventing or relieving side effects (see ECTRIMS 2017: Tecfidera – Results from the real world, MSology, December 21, 2017). And some people do have a few strategies to help ease their symptoms: 85% said they take Tecfidera with a full meal (to prevent stomach upset); 42% take it with applesauce, yogurt or peanut butter (for stomach upset); and 42% take low-dose Aspirin beforehand (to relieve flushing). Few people take stomach remedies (such as Pepto-Bismol or Zantac) before or after taking Tecfidera, which may be because few people said they had problems with stomach upset. Smoking and alcohol can worsen symptoms, but a majority of MSology readers are apparently clean-living, and said that stopping smoking (79%) or limiting alcohol consumption (63%) didn’t apply to them.
Survey respondents also offered some tips of their own. Here’s a sampling of what they wrote:
– I like to eat half of my meal, and take my pill in the middle of the meal. Also, I switched my timing from a.m. and p.m. to lunch and evening to prevent flushing at work, school, etc. When I took it in the morning, I found my flushing was worse. Also – peanut butter, peanut butter, peanut butter!!
– Just start it slow – it takes time to work
– Side effects lessen over time. Stick with it. I have not had an exacerbation for 10 years.
– Get in the habit of eating something, even if not much. It’s a habit you need to form. Sometimes I don’t even need a real breakfast and I am fine with taking my Tecfidera.
– Take Aspirin 30 minutes before the dose and be patient.
– Drink lots of water.
– Side effects were only a factor at the start of taking this medication
– I suffered from several side effects for the first 90 days but then I had no issues for the remaining three years I was taking the medication.
– Take it consistently. I find that I am more likely to experience side effects if I skip/miss a dose.
– Keep positive and keep at it.
The survey put a lot of emphasis on side effects, so we also asked how side effects with Tecfidera compared to what’s experienced with other MS drugs. A majority of people felt that the side effect burden was less with Tecfidera (53%), or was about the same as with other drugs (34%); while 13% said they thought that side effects were worse with Tecfidera.
Previous MSology surveys have found that people generally think that the medication they are currently taking is the best one (for them), and this group of Tecfidera users was much the same, The medication experience – like MS itself – is very individualized. Overall, it appears that many people do well with Tecfidera for many years, find the side effect profile to be acceptable, and have learned a few tricks of the trade along the way for managing their symptoms.
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