started Lemtrada today! 8/24

[alk]

one and a half years past round 2

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.

[Starla]

Thanks for sharing!

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

[alk]

one month post round 2

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

[alk]

11 Months

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.

[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

[pb909]

Thanks for posting your good news and I hope it continues !!

[alk]

I'm glad I can be an encouragement.

After reading what I wrote six months ago, I'm amazed at how far I've come.

[jlk9498]

I really appreciate the updates. AND glad to hear you are doing well!

[alk]

6 months

Well, it's been six months since I had my first round of Lemtrada infusions. A lot has changed for the better.

Around the time I hit month 5, my fatigue really started to abate. Now, instead of dragging myself out of bed at 8:30am I am waking up without an alarm and with energy around 7 or 7:30. I also am taking smaller naps of a half hour instead of 2 hours.

My vertigo is better. It's not completely gone, but here are days where I am not dizzy at all. On the days when I do feel the world spin, it's usually because I'm tired and should go to bed or the weather is bad.

My sense of smell has improved. This didn't completely go away, but now I'm noticing smells that I didn't realize were around until now!

My balance is improved. I rode my bike with my family for the first time in a year and a half. I was a little shaky, but not so bad that I was uncomfortable.

Numbness of the Right side of face is much improved. Now when there are bad weather days or when I'm PMSing half my face doesn't go numb or feel heavy like it used to. That's kind of nice.

[deege]

Thank you for sharing! I will be starting in 2 weeks so it's always nice to hear how people are doing. All the best to you and Happy New Year!!

[alk]

Coming up on Month 4!

I'm sorry I should've updated a month or two ago. It seems I only think to check this forum when I feel bad or a major change in medication is happening.

Months 2 and 3 were great! I've seen an improvement in my balance and strength. I carried my 9 month old Niece down the stairs with confidence! In the past I wouldn't have trusted myself at all. I would've handed her off to someone while I held on to the railing for dear life. There was even a time when I wouldn't have even walked with her. So that's a big improvement! I also managed to go hiking with my husband and 3 boys. I haven't been able to do that since I relapsed and got diagnosed two years ago.

I got my taste back! I haven't been able to taste chocolate in two years. Now I can!

My energy is starting to come back. I actually prepared dinner for my family two nights last week! Usually I just throw something frozen in the oven. It was nice to spend time in the kitchen again.

I think I'm starting to hit the four month slump. I'm battling a never ending cold and this past week I started to feel run down again. Besides the cold keeping me down, is it possible that what little bit was left of the steroids is finally leaving my system and I'm just left with my broken body? That's my theory, anyway

[alk]

One Month Update!

Hey everyone, It has been a month since I started my first week of infusions. I figure it's time to update.

Before I did Lemtrada, my whole right side was weaker than my left, I had dizziness every day, balance issues, headaches, a heavy feeling on the right side of my face, and numbness in my right hand and from the right knee down.

After a month, I have noticed that my numbness has lessened and I go whole days where it isn't there at all. My dizziness is better, but it is still there. The Valtrex makes me dizzy and sick so I'll have to wait another month to see how that is when I stop taking the Valtrex. In the last week I've noticed my headaches are almost nonexistant. My face still feels heavy, but it's only at night when I get really tired. The numbness in my right arm is gone! I still have some numbness in my right leg and foot, but it is better and, again, only seems to come at night.

I went to my Neurologist a week or so ago and he tested my strength. I am much stronger than I was before Lemtrada.

So overall, I would say that my symptoms are slowly improving. The ones that are there seem to come back at night when I'm tired.

Now about the fatigue, it is bad. My Dr said that would be the case for the first 3 to 6 months. I wake up around 8am, take a nap at noon or 1pm for a few hours, and then go to bed around 10. My awake time isn't very active either.

I know this is a marathon and not a sprint. So I'm very happy with my progress so far! I can't wait to see where I'll be at in two years.

[alk]

I think the Tremors are a side effects of the Lemtrada. That's your body reacting to all the dead white blood cells in your body. Drink lots of water!


Well, I'm one week post Lemtrada. I still have crazy headaches, dizziness and fatigue. My mom is staying with me to help with the kids. I'm not sure how I could've done everything without her. My mind is fuzzy too. I'm having a hard time focusing. My legs are much stronger though. I'm not sure if it's the steroids or what but I'm going to take it.

[pb909]

The night of my last Lemtrada infusion, I had some hellacious tremors and shaking, high temps, the works, for the whole night. After that, I was improved the following morning. Doe that sound like steroid rebound? Not an issue since then, just curious if that was what was going on...

Basically a rebound is re-emergence of symptoms that were controlled while taking the medication.
For me the steroids help my strength, especially my legs.
On Saturday I was so weak standing and transferring in and out of my wheelchair and fell twice.
Was a little better on Sunday and each day afterward. Took me about a week to get back to my pre-treatment strength.

[BadAttitude]

What is a steroid rebound?

You are almost done!

I never got a rash, neither did the other person that had Lemtrada the same week next to me.

One common thing is a bad steroid rebound over the weekend - the Dr. as well as a patient that recently went thru treatment warned us. I documented my experience in my thread.

The night of my last Lemtrada infusion, I had some hellacious tremors and shaking, high temps, the works, for the whole night. After that, I was improved the following morning. Doe that sound like steroid rebound? Not an issue since then, just curious if that was what was going on...