I learned about Evrysdi after an invitation to an information webinar hosted by the company. It was an oral medication taken daily. I was relieved. That seemed so much more doable compared to the spinal injections. Moreover, listed side effects were very limited (at the time at least). The only real bad issue that seemed remotely likely that could be bad enough to force me to quit was the chance of kidney issues. My confidence increased again at the prospect of being treated. I went for it.

After the obligatory fight with insurance, I was given my first shipment. I took it immediately. It has a surprisingly non offensive scent for a medicine and is yellowish in color. I had no immediate reaction to it so I assumed I was safe to continue to take it.

Oh how wrong I was.

Starting about a half a year in I started to be beset with a series of strange symptoms. It started with a tomato intolerance as strange as it sounds. The day after I ate fresh tomatoes I would cramp, bloat, and urgently need to use the bathroom. The cramping came with physical chills and nausea. After using the bathroom it would stop. Easy solution though right? Just avoid tomatoes. I did that.

Things escalated about another half a year later. I started getting the same issues with dairy. I switched to lactose free. Not long after I had to do the same thing for gluten. About then I noticed a generalized ache in my intestines. Heartburn was worse too. Poop became diarrhea and was that way even on a low fodmap diet. I was kept awake by stomach pain and during the day experienced fatigue. Something was horribly wrong and I needed it to stop.

The issue had to be a medicine. Food allergy tests came up clean and I was no longer eating anything remotely triggering. My body was rejecting everything solid. I was living solely off formula and antinausia pills. I stumbled across a reddit post about Evrysdi causing gastrointestinal problems and everything clicked into place.

With my doctors blessing I quit Evrysdi for two weeks as a test. The majority of the more violent physical symptoms stopped immediately. The ache persisted for about a half a year. I got infrequent cramping attacks every once in a while but that stopped as well. My diet returned to normal. I was able to eat without intolerances. I felt free again.

My physical strength began to decline again soon after stopping the medicine. That is currently where I am at the time of writing this. It’s frustrating and awful but less awful than the way I was living on it. I’m left again without a treatment since neither of the approved options for my type and age group are compatible for my body. I will have to wait for something else. I’m hoping that the next step will be Zolgensma being approved by the FDA for adults. That medicine is a one time infusion via IV that would permanently fix the problem with my DNA. Currently however, it’s only available for those under 5 years of age since strength loss is most critical during those years.

Just like the first part of this journey I remain hopeful. I will just have to wait patiently for the future to see what is in store. Hopefully the next incident will not be a painful one.