I started Tysabri Feb of 2016, it took 4/5 months being untreated to get to this place and it was entirely because insurance was being bullish and i would go as far to say unethical. The really sad fact here is that many people don’t have the resources or knowledge to fight these large companies and unfortunately they become disabled when they didn’t need to be. This is infuriating and once I have all this in check I’m going to devote my time to this cause.
Tysabri is a serious drug but I would say not so bad. My first infusion went ok. It pretty much wiped me out for a few days. The side effects of the drug for me were headache, ear ringing, and lethargy. After a couple days I was always back to the regular routine. I thought I’ve got this!
I had 7/8 infusions, all about the same. A few days of yucky feeling and then just fine until the next one. After my second infusion I relapsed while skiing in Utah. It felt like burning water was dripping down my leg or like someone was putting a lighter to my upper leg especially when lowering my chin. My arm was again numb. Not many people relapse on this drug, they typically would go off because the risk of PML gets too high, or the drug is tough on the liver…etc. I was majorly discouraged but hoped it was because it was too early to be entirely effective. I continued taking the drug, but we started researched plan b. If this doesn’t work and Im on the most aggressive thing that exists, what is next?
Jennie's MS Journey 