On Shingles

I don't think I've written all that much about my course of DMD treatments. Here's a quick run down. I was on Copaxone for about 6 months, then Tysabri for about 6 years, and I've just recently tried Gilenya.

Gilenya was great for awhile. My heart rate took about a month to normalize, but otherwise things were good. Taking a pill once a day was easy and there weren't really any side effects.

But then, 2 months in, shingles happened. Shingles! SHINGLES! AKA, the worst thing ever. Two entirely miserable weeks. About 3 days of EXCRUCIATING pain, exacerbated by things like moving and breathing. The rest was just varying levels of bad pain and some pretty extreme itching towards the end. I say the end, but it's been about a month now and I still have a few scabs left and pink scars that will hopefully eventually go away. I also occasionally still feel little sharp jabs of pain in the rash area, but nothing like it was before.

I'd love to share some pictures of my awesome rash, but I don't want to scar you. From extensive googling of it myself, I know that looking at other people's rashes can be horrifying and disgusting. However, I really enjoyed examining my own collection of blisters. I took lots of pictures, and they are awesome. But probably only to me!  I mean, they're awful, and they remind me of how awful it was, but still they are somehow awesome to look at. Since I'm kind, I'll just use this picture instead. When my niece heard that I had shingles, she said "You mean like those things on the roof of the house?" Yup.

credit: Randen Pederson

Because the Gilenya caused the shingles and because I really really really don't want to get shingles again, I'm currently on the market for a new DMD. I'm considering returning to Tysabri (which was like a miracle for me taking me from like 10 relapses a year to zero and which I was very happy with but ultimately the PML risk - even though so far I've been JC negative - is mighty scary especially with having already done it for 6 years) but am leaning towards Aubagio. Doc wants decision by tomorrow. Concerned about GI side effects and hair loss, as well as possible risks, but we'll see how it goes!