started Lemtrada today! 8/24

[dastardly]

Hi Alk thanks for your story it helps when you find out how others have weathered this treatment Im about to start thanks Craig

[alk]

Hey everyone! I'm less than a month away from my second year of infusions! This summer has been crazy!

I've been more heat sensitive since beginning Lemtrada. I'm not sure why, but it is. At first I didn't do a good job of staying cool so I ended up fatigued and old symptoms started creeping up again.

Despite this, I was well enough that I could go with my husband on one of his business trips to Utah where we used to live. I'm not sure I would've wanted to do that before. I wasn't house bound, but I stuck close to home to reduce stress. So, I had a great week visiting with old friends!

The second part of the summer I was really good at using cooling gear when I was out and staying inside as much as possible. Because of that, I have felt more clear headed than ever before. My memory is improving. I've also started to read books again! I was a big reader before I relapsed and was diagnosed 2 years ago. It was hard to concentrate once MS took over. I'm not reading quite at the rate as before, but it is much improved!

I'm starting to gear up for the second round. My parents are coming to help out for 6 weeks again. I home school so my mom will take that over for the six weeks. My doctor doesn't want me around lots of kids so she and my dad will have to take them to their classes and activities when my husband can't do it.

[alk]

Hey everyone! I'm sorry I didn't post during my week of infusions. Things have just gotten past me this year that I was good at keeping track of last year!

Week of infusions (9/7-9/9)
The days seemed to go about how they did the first year. I had a rash on my face the first evening after my first infusion. It went away with benedryl and it helped me get a little sleep. The first day was tense with adjusting to the medicines but everything went smoothly. Nausea was moderate. I found that if I kept food in my stomach I didn't feel so bad. Every morning I ate an egg and toast and that seemed to start my day off right. I only slept 4 or 5 hours a night because of the steroids.

The month after
I am sleeping a lot. The first few weeks I was averaging about 12 or 13 hours. Now I sleep about 9. A few low grade fevers have popped up but nothing serious. Heartburn is a bit of an issue so I've been taking zantac morning and night. This round I also took a probiotic and that helped a lot with gas, bloating, and all those other things. I've been loading up on cooked veggies and the constipation is not so bad either.

That's all I can think of now. I'll update more if I think of it

[Starla]

Thanks so much for sharing your experiences. I'm leaning towards Lemtrada and I find these posts help. Hope you're doing well!

[alk]

Hello All!
It's been a year and a half since my second treatment of Lemtrada and I thought I would give an update. I am still stable! While I still deal with lingering symptoms of past relapses, I am doing great!

This past summer my family went on 2 week road trip that included camping and long days without a nap. While I did get tired, I didn't have to stay in bed for a week to recover like I have in the past. Plus I managed to keep up with my family on their hikes and other random adventures. That wouldn't have happened before Lemtrada!

I still have bad days but my bad days aren't nearly has bad as they used to be.

As far as blood and urine tests go, they've come back normal every time. I have found LabCorp to be a great place to get my labs done. They keep everything on the internet so I can check my results whenever I want.