mmilly 28/01/18
Last reply 4 months ago
New to Shift.ms

Glad I found this site! Just a bit about me, I just started Lemtrada last week. It was my first round and I’m just wondering how Lemtrada-users are doing. I’m a bit out of it today. Just not myself. Dizzy, achy from the steroids, and just drained. And the side effects from the antibiotics are pretty strong too….never mind what the actual drug Lemtrada is doing.

Just wonder how long this feeling will last before I return to work my regular self again. Fortunately, I am working from home tomorrow. I understand some bounce right back and for others it takes longer.

I was diagnosed in 2009 with RRMS..have tried Betaseron, Copaxone, Gilenya, and Rituxan. Some had to be stopped simply because my counts were too low. Hoping and praying that Lemtrada is the ONE. Don’t really think there are many/any options after this one. Trying to stay positive.

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marcyg921
5 months ago

Hi and welcome to the website. I had Round 1 of Lemtrada in February of last year and it wear me out a lot and it wasn’t until about April time when I really started to feel improvements and like my old self again. I still have bad days but that’s to be expected but apart from that I’ve had no relapses and all my blood tests have come back fine. So remember just take it easy and try not to overdo it and remember there’s no set time frame for when someone recovers from this but the most important thing to remember is that the treatment is designed to stop you from getting worse.


mmilly
5 months ago

Thanks for the quick reply. I appreciate it. That’s what I have to keep reminding myself-that this is the time for me to rest and take it easy.
Best of luck with round 2 next month. Please keep us posted.


marcyg921
5 months ago

Thanks and Round 2 happens a week on Monday. Really looking forward for this all being over but I’m sure it’ll be worth in the long run. Keep us updated with how you get on, Lemtrada really is a wonderful drug, just takes a lot of out you.


tracyd
5 months ago

@mmilly Welcome to shift

The last 3 years of my life, from before I had R1 of Lemtrada in May 2015 are all published, life the world and everything. It’s sort of an Adrian Moles Diary for a middle aged bird with MS.

I’d suggest starting at the beginning and working your way through as it stracks everything in real time.

http://www.tracyslemtradajourney.co.uk

Year 1 of the blog is also available on Amazon as an easy to read eBook for £1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity.

You have a friend request, if you want a ‘lemmie’ to talk to, I’m happy to share contact details on PM xx


toolman
5 months ago

I had mine last week to and feeling the same! Each day is a bit better but still get tired really quick your not alone!!!


mmilly
4 months ago

Thanks toolman. I continued feeling better and then was pretty much back to my own self for a couple of weeks but then I started with feeling achy, weak, chills, feverish, and headache for the past 6 days or so. Starts mid afternoon to early evening. I’m sure it’s temporary but even a day feeling like this-feels too long.


mmilly
4 months ago

@tracyd, thanks for sharing your blog.

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