Last reply 1 month ago
Advice on Lemtrada?

Hi Everyone,

Quite new here, my journey to my MS diagnosis was quite a lengthy one. I started showing symptoms just after my 21st birthday in 2014, however finally got my diagnosis in Feb this year. Since then I feel that things have been moving very quickly and I haven’t really been able to catch up with myself or process anything that’s been happening.

I have recently started Copaxone (about a month ago) and I am really struggling with it, I have a low fat percentage on my body so I am finding the injections pretty painful. The reason that I chose Copaxone is that you are still able to conceive whilst on it, unlike the other DMT’s.

After my last appointment with my Neurologist we discussed the benefits of Lemtrada and whether it would be something that I’d be interested in. After speaking to a few people and reading up on it I think logically it would be the best choice for my health as it is most effective earlier on in your diagnosis, and is 70% effective unlike the Copaxone which is 30%.

However, I’m struggling with the idea that I will probably have to take a fair bit of time off work to have Lemtrada, and won’t be able to try for a baby again for about 2 years (I had an ectopic pregnancy earlier this year meaning my fertility is reduced, so would be keen to try again sooner rather than later in case that happens again). I am looking for some advice really from people who have had Lemtrada, and if anyone else can shine any light to help with my decision.

I am attending a discussion group about Lemtrada on 10th October. Any help is appreciated xoxoxox

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zarah
1 month ago

Hey @sammy93 am now 6 weeks post round one of Lemtrada and can honestly say it was the best decision I ve made. I was diagnosed March this year so my neurologist wants to hit it hard. I was abit nervous with my decision but so glad I’ve done it. Feel free to message if you have any questions xxx


sammy93
1 month ago

Thanks @zarah I know logically it’s the right thing to do, I think I’m just scared and it feels like I’m putting my life on hold to do it. How long after your infusions was it before you felt yourself again? What was it like once you got home from hospital? xo


vixen
1 month ago

Hello @sammy93. I don’t have Lemtrada experience but wanted to say ‘hi’! I got diagnosed last year and would say it look about a year to process things properly, so be kind and generous to yourself. Also, women twice your age are happily having babies; you’ve plenty of time to get yourself sorted first and get yourself straight, so please don’t feel you need to rush x


zarah
1 month ago

@sammy93 I took it easy when I came home n slept mostly a few days after it but was functional after about the 3rd day xxx


sammy93
1 month ago

Thanks @vixen I know a lot of people conceive at different ages. I just don’t think I like it being decided for me when I can and can’t do things and because I have reduced fertility it plays on my mind a bit. I think it’s just deciding what’s best for me right now xo


sammy93
1 month ago

Wow that’s brilliant @zarah I was concerned I’d be out of action for a few weeks xo


zarah
1 month ago

@sammy93 I think as long as you rest when ur body tells u n drink lots of water u ll be fine xxx


sarahwestwood
1 month ago

Hi @sammy93

I haven’t got experience yet of ths treatment, but I am going in for my first Lemtrada treatment on the 22nd Oct. I was only diagnosed a couple of months ago, but most recent MRI has shown more lemons on my spinal chord in my neck, so this treatment seems best option for me! feeling pretty nervous and concerned also about the work situation as really can’t take to much time out! I guess for me it was weighing up short term pain for hopefully longer term gain! Good luck with whatever decision you make 😘


gee89
1 month ago

Hi there,

I had lemtrada just over three months ago now. Like you I was expecting to feel awful for weeks afterwards. But other than sleeping a lot and having a rash for a few days it was easy to get over for me.

I had 2 weeks off work as I’d booked it as holiday but would have been fine going back mid week the 2 week i think.

3 months out and I feel amazing – strangely I didn’t realise how I’ll id been before it until I felt better!


sammy93
1 month ago

Thanks @sarahwestwood and @gee89 🙂 @sarahwestwood I hope your treatment goes well, keep me updated on your progress xo

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