Last reply 2 months ago
Starting Lemtrada

Hi everyone I am very new to shift but was advised by my ms nurse to try here. I am due to start Lemtrada very soon (i am rrms dx 2009 from uk) but I’m having a lot of doubts after reading some people’s experiences on fb. I wonder if anyone could give me their opinions? I have a husband and a 6 year old daughter and I’m petrified that something bad will happen 😔. I’m really sorry if this has been asked loads but not 100% sure how to use the site properly yet lol.

Thank you
Gem

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sandwich
2 months ago

Hi Gem,
if you do a search on here you will find loads of posts. I’ve not visited the facebook sites for a while so not sure what the general opinion is these days but I’ve had it and have been fine.
I finished my second year of treatment in 2016. I’ve had no relapses since and my mobility has remained fine. In fact I don’t feel like I have MS – that said I was fine before symptom while so in my case its hard to tell if its not anything. All I can say confidently is that I’ve continued to be symptom free. My last MRI was stable too. Somewhat interestingly which may or may not be lemtrada related is that my eyesight has improved since having the treatment and I no longer need glasses. I had a bad first episode of MS and the end of 2012 which left me with some slight residue damage to my sight. Nearly 6 years later it seems to have resolved.

The actual treatment was ok. I got the rash and spent a few days in bed recovering. I felt tired and a bit rough for 2/3 days after. For both rounds I was back at work within a week or two.


stumbler
2 months ago

Hi @gemmaw and welcome to our exclusive club.

Yes, there have been numerous conversations about Lemtrada. These can be located by selecting the “Lemtrada” tag that has been added to the end of your post above.

I can understand your concern about this therapy. It is a major decision with some risk. But, this risk has to be seen against the risk of what MS can do to you. The risks with MS are unpredictable, but the risks with Lemtrada are known and you will be closely monitored.

So read other’s accounts, views and questions then you can make your choice.

Feel free to ask as many questions as you like.


lacemister
2 months ago

Hi Gemma

I am three weeks post 1sr round I feel good and the infusion was uneventful. I was a little worried before I started but my experience has been very positive. During the infusion I drank lots of water as told and took the week after off. Except for feeling tired the first day after I took it easy and am now back to work feeling fine. In fact I enjoyed the week off
Relaxing .
I am pleased with my choice and did have concerns before treatment after reading some posts. But I researched talked to the ms nurses and am glad I did.
Monitoring is excellent and no daily medication needed I go back in a year for round 2.
My experience has left me feeling blessed that it is available and was offered to me and it was the best choice for me and my family.

Good luck with your choice


jodieb
2 months ago

Hi Gemma,

I am due to start my Lemtrada soon as feel exactly the same! I have days when I feel like a wimp and i’m scared something will happen; but then I have days when I feel like a warrior and I’m ready to take it on. Someone gave me some advice this week – you only get one life so make the most of it! It’s true! I have a husband and three sons and I want to be the best I can be for them! And that’s the reason I made the decision to go for Lemtrada.
Good luck! Keep us posted.
Jodie Xx

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