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LEMTRADA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.

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My Experience with Side Effects LEMTRADA patient blogger: Rachel By Rachel, Wife, Mother, Domestic Engineer • April 6, 2017

Lemtrada® Patient Kimberly’s journal of infusion side effects

*Insider advice: Keep a journal of some sort to document your entire infusion experience. It’s a great way to keep track of how you’re feeling and any infusion-related side effects that you may have. I kept a journal and found it was super helpful to keep track of my experience. It was also a useful way to document when and what medications I took—which also made it easy for me to recall for my personal use and report it to my team of healthcare providers, so we could maintain good communication.

Even though my healthcare team had thoroughly prepared me and explained potential infusion-related side effects and long-term side effects, this was all uncharted territory for me. I was equally scared and excited about my first round of infusions.

I started off by taking the premedication that my doctor recommended, but apart from getting an IV placed into my arm, I had zero discomfort for the first 2 days. On day 3, however, I began to experience hives and I also got a rash on my chest and face—but those things were treated with an increased dose of antihistamine. Those infusion-related side effects continued through day 5 of infusions and lasted a little bit into the weekend after. Eventually, the infusion reactions had run their course and I recovered from them.

For my second round of infusions, I took the premedication again. I had the same hives and rash on my chest and face. And again, the side effects were treated with an increased dose of antihistamine. Also, the infusion-related side effects didn’t last as long as they had the first time around, and I was able to recover from them more quickly.

Since my first treatment course of LEMTRADA, I’ve continued the required monthly monitoring to check for any possible long-term side effects from treatment and so far, all of my labs have come back as normal!

In my experience, the side effects I have had with LEMTRADA have all been infusion-related. Even though I haven’t personally experienced any other issues, I’m still mindful and I always watch for other long-term side effects, such as signs of autoimmune problems.

I really appreciate the monthly monitoring. It’s good to know someone is looking after me.

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