Trying a New Infusion Treatment: My Experience

When I started a new infusion treatment for MG, I was excited to contribute my personal data to an ongoing research study. I’m a big evidence-based practice (EBP) and research nerd. It was now time to put my faith in it from the other side of the treatment chair.

My first treatment brought with it a not so gentle reminder that even helpful medications have risks. A few minutes into my infusion, I noticed my gums were tingling. I sat in my chair with a puzzled look on my face when my nurse returned she asked me what was up.

Leaning on my care team

She promptly reminded me that I am not a nurse here, I’m a patient, so I told her I wasn’t sure if it was related or not, but my gums were tingling. Before I could say, “but I think I’m okay,” she’d paused my IV pump, and hollered for “a little bit of help in here,” and I knew what that meant.

I was embarrassed and scared and started crying because all the worst case scenarios ran through my head. Plus, I felt bad for causing extra work for 3 other nurses who weren’t even assigned to me.

During that first infusion this reaction happened 2 more times but by the 3rd occurrence it was slightly less intense. That was a long, Benadryl-filled day and I needed a ride home at the end of it.

Taking some extra support with me

That night I went home and worried about my second treatment, which was supposed to take place in 2 weeks. I talked with my doctor and built up the strength to go to the next one. This time however I’d take my husband with me, so he could bring me home if I had to get more Benadryl.

As it turned out, that weird reaction happened not only the second day of treatment, and if memory serves me, the 3rd time as well. I started to wonder if this treatment was worth it, or if it was going to get worse. I worried about all the worst case scenarios and nearly had an anxiety attack.

I don’t remember what it was that made me decide to keep going to these appointments, but the first time I got my full pre-med regimen and the infusion without incident, I felt so relieved. In fact, not only did the treatment go smoothly, the next day I saw a noticeable difference in my symptoms. I finally felt like I could exhale.

Trust the process, lean on my village

To this day, not every treatment goes well, but more often than not they do. The past few years have taught me to trust the process and lean on my village. This year my best friend has been an amazing addition to my infusion day good luck ritual. She now picks me up and accompanies me to my appointments, but not before we roll through the Taco Bell drive thru. Now I know what you’re wondering, “Katie, why doesn’t your husband take you to your appointments?”

Let me start by saying Husband is a very gentle soul, but he’s passed smooth out on more than one occasion getting his own blood drawn at our PCP office, all but fainted at one of my plasmapheresis appointments, and the times he did accompany me to my infusions, he nearly got sick because he is so averse to needles, IVs, and related things. So while he would stay with me at my appointments if I requested it, he really appreciates that Bestie isn’t squeamish so he can just keep a watchful eye on me afterwards.

Although there are many uncertainties in life, especially in life with an autoimmune disease, I have learned deeper meanings of the words hope and gratitude in receiving this treatment. Is it a perfect treatment? Absolutely not, but it’s definitely helpful.

Have I reached remission yet? No, but again, I am able to hope for it. The most important thing I can remember in all of this, is that I have to enjoy my life and do what I can, when I can, for however long I can.