The Great MS Meds Survey – Part 5
What people say about their MS medication – Infusion therapies
The Great MS Meds survey enabled people with MS to talk to us about their medications. In Part 4 of this series, we looked at what people said about the oral meds they were taking (Aubagio, Tecfidera and Gilenya). In this final article in our series, let’s look at what people said about their infusion drugs (Tysabri and Lemtrada). These meds are usually taken only by people with severe MS, so it’s important to note that only a few respondents are currently taking one of these infusion therapies. However, many people now take a higher-efficacy therapy earlier in their treatment course to get control of their MS. (For more on the survey, see also Part 1, Part 2, Part 3 and Part 4 of this series.)
Tysabri: This medication is taken by infusion (a slow drip into a vein) once a month. Respondents who were taking Tysabri were typically in their twenties or thirties, and had generally tried two prior medications – one or more injectables, and an oral therapy. People were switched to Tysabri because their prior medication wasn’t working, although a few commented that they had problem side effects with other drugs. Most people had been taking Tysabri for less than two years. This is because Tysabri use is generally limited to two years because of the increasing risk of progressive multifocal leukoencephalopathy (PML), a potentially fatal brain infection.
A majority of people rated Tysabri very highly. “It’s a great medication that has helped me,” wrote one respondent. Another said: “I particularly liked that it halted disease activity – unlike the other medications I tried.” People generally found that they had few side effects while on the drug. The biggest issue was how long the infusions take – about 2-3 hours, plus travel time to and from the infusion centre. As one person advised: “Bring a book.”
Lemtrada: This is one of the newer medications, and one that is often perceived as being the most potent MS drug. So it’s commonly used after other medications have proved to be ineffective. In clinical trials, progressively worsening disability often stabilized, and a substantial proportion of people found that their disability improved.
Most of the survey respondents said they had been taking the drug for less than 5 years (which corresponds to how long the drug has been on the market). All of the Lemtrada users had taken 2-3 prior medications – at least one injectable, at least one front-line oral (such as Tecfidera), and Gilenya. One person had also taken Rituxan (the precursor to Ocrevus), but it didn’t do the job as well as Lemtrada. For most people, all of their prior therapies had failed; a few commented that they’d had severe side effects before making the switch. “My quality of life was terrible,” said one woman who had previously been on an injectable and a front-line oral.
Why take Lemtrada? “It stops the progression of MS, no more daily/weekly/monthly meds, clean MRI, no brain atrophy – there are a million reasons,” said one woman. “Don’t expect to be jumping through hoops while going through the process. But the side effects of Lemtrada are still far better than a life with MS.”
Lemtrada is taken as a series of infusions (5 in the first year, 3 in the second year) once a year; thereafter, most people won’t require further therapy. All respondents commented that they liked the infrequent dosing. And they liked that Lemtrada worked when everything else had failed. The greatest challenge to the medication is infusion reactions, such as rash, itching, headache, etc. People are given other meds to lessen these symptoms (such as a course of steroids, Aspirin, etc.), but treatment can still leave you feeling lousy during the week of treatment and for several weeks afterward. “Be prepared,” advised one respondent in her forties. “Have your things in order before beginning [the infusions]. Have some meals in the freezer, have lots of help around the house, and have things to do to keep you busy at home.”
“You’ll feel awful for a while,” agreed another respondent. “But hang in there. All of a sudden you’ll realize how much better you feel! It just kind of sneaks up on you!”
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