Evrysdi and Me so Far

Graphic showing what Evrysdi does

I have been taking Evrysdi since Friday. So far, the only thing I need to be cautious about is washing it down with enough liquid. It doesn’t taste bad, vaguely berry-ish. It does, however, leave an odd sensation on the tongue. Since the instructions are careful to tell us to wash our skin carefully with soap and water and to AVOID getting it in our eyes at all cost, I’m guessing it may be somewhat caustic. Acidic? Basic? I don’t know, but I drink until the sensation is of my tongue.

I haven’t jogged around the room, in case you were wondering.

When/If I notice something that cannot be labeled as “placebo effect,” I will be sure and post it here.


Yes, I Have Been Gone a Month.

Sometimes life just crashes in on you, doesn’t it?

I have been trying to take care of my pressure sore. (It is healing well, thanks for wondering. Maybe 2 more weeks?) Since it is the first one I ever had, I and my family and caregivers were feeling foolish for letting it happen in the first place. I suppose guilt is in there, too. It often rears its head, especially when it is truly irrelevant.

I think that the worst part is that it stole computer time from me! That has been filled by Amazon Prime Movies. While I have seen some truly unexpected gems, some were NOT. 😉

I also started something new. Here are some quotes from my private diary.

I cannot tell you how quickly things moved to get things started with Evrysdi. It was nothing like my experience with that other medicine. This time, the doctor prescribed it. It got forwarded to Medicaid/Medicare. They approved it. I got a call from the pharmacy that works with this medicine. I have been trained in how to take it. They plopped it in the mail. It arrived, and I took it.

I will have to drink more water afterwords and maybe eat something soothing. It feels/tastes uncomfortable on my tongue. That is something of a caustic medicine, I guess. The instructions say not to get any of it on your skin. It helps distribute SMN the body, slowing the deterioration due to SMA. People getting it early enough seemed to have really good results. This webpage shows what Evrysdi can do – and has done in testing with real human beings.