Monthly Archives: June 2015

Heat, Dizziness, Negative Progression and Aubagio

Wow. It has been hot and it’s only getting hotter. We have been in the triple digits (-37+ Celsius) and just trying to maintain the temperature in my room

Tysabri, Aubagio and Lemtrada

First let me just say, it is so hard to type right now… My coordination is not perfect so I miss keys and my fingers are kind of shaky so I double tap a lot. I try to catch it all but my vision has continued to get worse day by day so… most likely there will be weird spelling errors. On top of that I do not feel well so I am keeping it really short. I saw my neurologist yesterday; I was the last patient and everyone was going home so he basically saw me after hours. We talked and since I was still getting worse we agreed it was time to switch to Lemtrada. We did not talk about it directly but it may be that I developed a neutralizing antibody to Tysabri. It happens and it basically means that my body started producing antibodies that neutralize the effects of Tysabri. So I am doing a 6 week wash out before I start Lemtrada. That just means I am waiting for 6 weeks for the Tysabri to clear out of my system. To help bridge me from Tysabri to Lemtrada without (hopefully) rebounding I started Aubagio today. I seem to have body aches and I feel hot but I am not; luckily no nausea. But since my last infusion was 2 weeks ago that means I can start Lemtrada in 4 weeks.

I have a feeling the next 5 weeks will not be fun but if it works it will be worth it (again, I hope) as it’s 5 days in a row of Lemtrada infusion and then 3 days on Lemtrada infusion and then…. That is it. Just lots of blood work and monitoring. I can’t get into it all right now but maybe my next post, hopefully some of these side effects start to subside…

I Have Been Having a Rough Time

It’s been about a week since my last post. So much has happened. It’s funny because long ago I would blog every day

Nystagmus Treatment Fail & Tomorrow is My Birthday

Wow I have just been=&0=&