From Itching to IV Benadryl: DMT Infusion Reactions

In the time that I’ve had multiple sclerosis (MS), I’ve tried quite a few disease-modifying therapies (DMTs). These are medications specifically designed to help manage the course of MS. DMTs come in different forms: injections, pills, or IV infusions, each with its own list of potential side effects. Today, I want to talk about the side effects I’ve personally experienced during my DMT infusions.

My experience with DMT infusions

When it comes to infusible MS DMTs, I’ve been on Tysabri (Natalizumab), Lemtrada (Alemtuzumab), Ocrevus (Ocrelizumab), and Briumvi (ublituximab-xiiy). While these medications are all different, the infusion process is pretty similar for all of them. That said, just like with any other medication, DMTs affect everyone differently. What I experienced might be completely different for someone else.

Before the infusion started, I would always receive premeds like Benadryl, Tylenol, and Solu-Medrol (a steroid). These are typically given about 30 minutes beforehand to help prevent infusion reactions: side effects like itching (pruritus), headaches, or nausea that can happen during the treatment. Even though premeds are meant to help, they don’t always completely stop reactions from occurring.

Itching

As for the actual DMT infusion, I’ll be using my experience with Ocrevus as an example. After my premeds kicked in, and the actual infusion had started, my experience would be the same every time. After half an hour, almost on the dot, I’d start feeling a slight itching in my ears. It would then slowly spread to my eyes and nose while growing in intensity.

At first, I would try to just power through it all, because I really don’t enjoy IV Benadryl. Once the itching had reached my nose, it would start to spread even quicker. Now I would feel it in my gums, lips, and tongue! No matter how much I tried, scratching that itch with my teeth just wasn't cutting it.

Finally, the itching would start working its way to the back of my throat, which is when I was done trying to push through it. Time to alert my infusion nurse that I was definitely ready to hit that pause button.

Drowsiness

After pausing the infusion, I’d be given an IV shot of Benadryl. After about 30 minutes, the symptoms would subside, and we would restart the infusion. The whole “no more itching” thing was great and all but… this came with a price. Now I felt so drowsy that I knew the rest of my day was basically canceled to make room for a Benadryl-induced coma-like nap. Fun. I dreaded the IV Benadryl more than the infusion reactions if I’m being honest.

With Ocrevus, the side effects didn’t get better with each subsequent dose as I had hoped. While each dose after my first never seemed to have as much of a “kick” as the first one did, my infusion reactions were always just as strong. So unfortunately, IV Benadryl was never a “maybe” while I was on Ocrevus.

Different reactions with various DMTs

When I later switched to Briumvi, I was expecting it to be just like Ocrevus: lots of itching and Benadryl. To my pleasant surprise, I only experienced minor itching during the first dose, but no reactions during any of my future Briumvi infusions. Back to my Tysabri days, I didn’t ever have to deal with any kind of side effects whatsoever! I remember asking to not do pre-meds once I had infused Tysabri a few times with no issues. Lemtrada affected me much differently, but that’s another story.

What about you?

Knowing that we are all different and might all have different experiences with the same medications, how have DMTs affected you? Have you noticed one type of DMT affecting you more negatively than others? What kind of infusion reactions, if any, have you dealt with, and how did you treat or try to prevent them? Share your experiences in the comments below!