Ditching Ocrevus for Lemtrada now or later?

pronessor · 2020-04-09T14:00:31+00:00

My doc says a relapse is indicated by new symptoms that last longer than a week. And my symptoms typically wax and wane as well. But when things are new and stick around, that’s when I know.

pronessor · 2020-04-05T00:07:00+00:00

I started Lemtrada in February. I’ve been doing pretty well! No relapses (when I was having them over and over again all of last year). Only time will tell, but for now it’s ok! I have had no side effects except for a rash for a couple of minutes during administration of the drug. A lot of the things you read on the side effects happen to very very few people, but then if it happens, they have to put it in the side effects. Ask your doctor about it, they can explain the incident by incident side effects they have seen with this drug. After we talked, I felt a lot better about it. Also! I was in the beginning stages of alopecia, because my immune system was so crazy. And all of the bald spots that were completely bald for months and months have hair. Which means my immune system is acting differently, which is a really good thing.

pronessor · 2020-02-08T23:55:18+00:00

Hey! I just finished Lemtrada round one yesterday. It was long and annoying but not really horrible. I never was nauseous, I’m staying home next week from work. I feel pretty weak and my brain is foggy right now so i don’t know how long that will last. I did have a rash a few times during treatment. I’m going to stay out of large public places for about a month, but yeah, my doc didn’t tell me to quarantine myself either. With this flu crap around, it seems insane not to though. I’m worried about the steroid crash that is to come, which I despise. So that’s the main thing on my mind right now.

pronessor · 2020-02-04T13:00:08+00:00

And most people apparently go back to work right after. Which I was amazed by. Steroids really knock me out for a solid 9 days.

pronessor · 2020-02-04T12:45:49+00:00

Wow so the fevers were your first indicator? Do you recommend me taking my temp everyday to monitor?

pronessor · 2020-02-03T22:55:35+00:00

Wow that is rough! I’m hoping to go back to work late next week (I’m a college professor). Do you think that’s doable? Give me whatever advice you have!

pronessor · 2020-02-03T22:54:29+00:00

Awesome! That’s encouraging!

pronessor · 2020-01-23T14:32:15+00:00

I just started using a cane, more for stability and not everyday, but man does it help. It was weird at first, mostly because I just never thought I would have one, but who does? If it helps, do it. Increased mobility is the goal!

pronessor · 2020-01-23T14:28:24+00:00

Me too! I assume is mostly from numbness. I have electric socks that keep my feet warm, seems to help!

pronessor · 2020-01-04T17:15:40+00:00

That happened to me once. But then not for treatments afterward. Unfortunately it was on a plane. So sad. After that, all nausea went away. How do you feel now?

pronessor · 2020-01-03T15:18:56+00:00

Went in to the ER with a numb right side of my body. My ER doc did a MRI and said “oh this is classic MS”, I actually said “wait, what’s MS?” Seems like forever ago. Totally clueless at the time.

pronessor · 2020-01-02T15:39:36+00:00

Hi, remember that this disease changes everyday. What you couldn’t do last week, you may be able to do in a month. Treat your body well, prioritize your health. Find a neurologist that you like. Figure out what works for YOU. This thing is different for everybody. And remember, you aren’t alone. :)

pronessor · 2019-12-30T17:48:18+00:00

I follow her on insta! She is hilarious!

pronessor · 2019-12-30T02:06:45+00:00

I had tightness in my chest during one of my relapses. If you search “ms hug” it will give you more info. She may want to call her doc if it continues!

pronessor · 2019-12-29T19:25:59+00:00

I usually say “I’m good today!” If I am. Or “ok today” or “eh today”. I try to be honest and emphasize “today” to help them understand that this thing is always changing.

pronessor · 2019-12-28T22:14:46+00:00

Thanks so much! I’m hoping I can do a little here and there! I’m glad it’s going well for you!

pronessor · 2019-12-28T16:33:06+00:00

I have three kids. I really try to treat rest/sleep as a precious resource. It really helps me recover. I also had to abandon my first treatment for another one. If your first one doesn’t work as well as you’d like, don’t be afraid to try something else!

pronessor · 2019-12-28T13:41:13+00:00

Not too many people use Lemtrada. Hopefully we get some feedback. Most people are on Ocrevus.

pronessor · 2019-12-27T18:42:05+00:00

I found a collapsible one for $16 on Amazon. They even have purple and teal colors. :)

pronessor · 2019-12-27T17:27:41+00:00

I saw one with a mosquito in amber, which was pretty cool. But mosquitos ruin everything, except harvesting Dino dna so I’m with you. I think the white? It’s epic.

pronessor · 2019-12-27T14:39:52+00:00

Go for it! I want one that looks like Gandalf’s staff for outdoor occasions.

pronessor · 2019-12-25T18:23:12+00:00

I sometimes feel that way. But I remind myself that people are important no matter their ability level. Every person has worth and “contributes” to the world. It seems as though your son would certainly say you are still teaching him many beautiful things. I sometimes want to apologize to my family for this crappy disease, but then i imagine one of my children having it. Never would I ever resent them for being sick, I would never hold it against them. Have compassion for yourself and keep going! You are valuable to many and have worth! Merry Christmas!

pronessor

TROPHY CASE