gates1989 26/02/17
Last reply 1 year ago
5 weeks post Lemtrada …

Hi everyone, tomorrow will be 5 weeks since I completed my first round of Lemtrada. Here’s how it’s gone in a nutshell..
Week one post: I was tired and rested all week!
Week 2 and 3: some days still a bit tired here and there but also the steroids wore off and as I was relapsing when I went in, I was struggling a bit with the effects of it. I had zero balance and my legs were weak that sort of thing.
Week 4: I was getting better slowly but still was not 100%. I also started taking Pregablin for my knee and back pain.
Week 5: I feel amazing! My balance is pretty much back to normal I haven’t really struggled with my back pain (which would prevent me from standing too long or really affect my walking!) and I’m back to work tomorrow! So far, I’m feeling pretty good! 10 times better than when I went in for Lemtrada.

I don’t know if I feel good because of Lemtrada or if it’s just because I’m over the relapse but I don’t really care! For the first time in about 6 months I feel (and look) normal when I walk around and go out to see people! I’m happy!! Just wanted to share a little update!! Xxx

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stumbler
1 year ago

Great news, @gates1989 . Long may it continue. 🙂


red-suzuki
1 year ago

Fantastic news @gates1989 ….its those little victories that really make you smile 🙂


gates1989
1 year ago

Thank you both, it really is! I really hope I’ve turned a corner! 🤞 X


doubleo7hud
1 year ago

gowannnnn lass! Keep posting on how your feeling please I want lem just waiting for final blood tests and off to ms clinic I go not too far behind thee


gates1989
1 year ago

Hi @doubleo7hud thank you for replying! I’m pleased you are finding it helpful! If I was feeling like rubbish I wouldn’t post because I wouldn’t want to worry anyone who is thinking of Lemtrada or going through it too but I genuinely have improved so much! So I wanted to share my journey so far! Good luck with your journey I hope it goes as smoothly as mine has (without the initial relapse!)


doubleo7hud
1 year ago

@gates1989 glad your doing well it’s good to hear positives spurs thee on, hope all Carrys on that way for you too keep us In’t loop little southern duckling 🐥 😂


dmarucci
1 year ago

Hi gates1989, your lemtrada experience is an inspiration! I am going to ask to move from gilenya to lemtrada. Nothing has worked for me so far Copaxone, tysabri or Gilenya. I am trying to get Lemtrada at my next appointment Ive decided for sure after reading good reports such as yours. Thanks for the updates I hope I can be as happy with Lemtrada as you are!


tracyd
1 year ago

@gates1989
Awesomeness 🙂
Don’t overdo it just because you’re feeling good xxx


gates1989
1 year ago

@dmarucci, my journey so far is the same as yours. I failed on copaxone, tysabri and gilenya, this is my last ditch attempt so I’m just thinking positive!! @tracyd, thanks, I went back to work yesterday, I commute from essex to London and it was hard! Back is killing me today but I’m working every other day to ease me back in!! Xxx


bethpen
1 year ago

That’s great news, well done!


gates1989
1 year ago

@bethpen how are you getting on?


bethpen
1 year ago

Pretty good thanks. I’ve been well other than low energy, few headaches. Not working full time yet but enjoying it when I’m there. Defo glad I did it!


rachaelg
1 year ago

@bethpen @gates1989 this is good to read – I have to come off Copaxone and choose between Gilenya and Lemtrada, and I’m leaning very much towards Lemtrada. Glad you’re all doing well!


gates1989
1 year ago

@rachaelg all you can do is read up fully on both medicines and make an informed decision, I failed on Gilenya but know a few people who it works well for! They’re very different medicines and work in different ways but if you feel Lemtrada is more for you then good luck! Xx


makkymee
1 year ago

Hi @gates1989

Thanks so much for sharing. It’s great to read your weekly nutshell, although sorry to hear you were relapsing when you went in 🙁

Hope you continue to feel amazing.

Thank again
Makky


gates1989
1 year ago

Thanks @makkymee I’m glad you enjoy my little nutshells! Yeah but I’m over that now and even back to work 3 days a week! It’s tough and sometimes painful but I’m doing it and to me that’s all that matters, hope you are well xx


morgant
1 year ago

I hope it continues to be helping. This also has helped me with weather I want to start lemtrada

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