marcyg921 10/02/17
Last reply 5 months ago
My Lemtrada experience (Round 1)

Hi all,
So today I finished Round 1 of Lemtrada and I thought I’d share how the whole thing went down for me, first I’ll just say, it was much easier than what I ever thought it would be. So anyway here’s what happened during my week of Lemtrada.

Day 1 – Arrived at the Hospital at about 8am and got all checked in and had my first set of pills, unfortunately, as anyone else will tell you, Monday is the longest day for this due to so much needing to be sorted out. Steroids finally got started at about 11-11.30 and this took about an hour then at around 2pm I finally got started on Lemtrada. No real side effects except for a slight headache which cleared up in a matter of minutes, then about 7pm the flushing began, unfortunately, while being monitored I was told my heart rate was up so needed to be checked over again during the middle of the night. All in all, easy day, just very boring.

Day 2 – Very little sleep but managed to get started on the steroids at about 8.30am which meant I would be done much earlier than the Monday, no issues here, everything went smoothly, in fact it was going so smoothly I’m beginning to wonder if anything was happening.

Day 3 – Pretty much same as day 2 except I was starting to feel really tired due to the lack of sleep and the lovely Lem-Rash made its first appearance but nothing major, cleared up pretty quickly once the Lemtrada was done. All in all happy with my progression.

Day 4 – I can barely keep awake and Lem-Rash is back with a vengeance, all over my arms, face and legs but again disappeared fairly quickly once Lemtrada was done, the night was horrible though, slept for a few hours between 6-8pm but could not sleep at all during the night, 2am was woken up with this insane itch on my arms and hands, so please if you’re getting this treatment, take some cream or something, I can’t stress this enough.

Day 5 – The final day, again I’m so tired but not itchy (thank goodness) they get me started at 7.30am which means I was out the Hospital by 3.30pm, barely anything to report for this day, rash never really came back, was just nodding off, felt a bit loopy because at times I didn’t know what I was saying and again just bored as I just wanted it done.

So as you can see, my main problems were tiredness and the rash, all in all I’m definitely happy I went through with this as the rash is already nearly gone and hopefully I’ll get my sleeping pattern back in order, if you ever have a chance to get this treatment, I’d say go for it, the process is relatively easy and now I can rest easy knowing I’ve told this MS I’m not about to let it take over my life.

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doubleo7hud
1 year ago

Ey up marcy did you have any other treatment before lem how did you get to the point where you were fortunate enough to be offered it etc iv just been diagnosed so looking at all the options


gates1989
1 year ago

So pleased it all went well for you!! X


marcyg921
1 year ago

@doubleo7hud No, I didn’t have any other treatment other than Lemtrada, I was diagnosed back in November and my Neurologist said this treatment was the best for me in the long run


doubleo7hud
1 year ago

Awsome thanks I’m gonna swat up now


abhishiv90
1 year ago

You’ve started Lemtrada already? Well, your doc would know best and I’m glad everything went well. Fight on!


makkymee
1 year ago

Hi Marcy,

Pleased to hear you had a good experience during round 1 🙂

This is such a great post as I’m thinking about starting Lemtrada. Going to start reading up on it. What cream did you use and is the lack of sleep one of the side effects?

Thanks for sharing, really appreciate it
Makky


marcyg921
1 year ago

@makkymee Thanks 🙂 I didn’t use any cream because everyday I was given medication such as anti itching tablets to help ease it and if needed I could have more (1 every 4 hours I think it is) but like I said, once the Lemtrada was done, the rash very quickly disappeared, it was really just that Thursday night. As for the lack of sleep, I think it is a side effect of steroids but you’re also wearing your body out so you do need to rest, right now I’m back at home just resting, I do constantly feel tired but I know that’ll eventually pass. Any more questions feel free to message me


tracyd
1 year ago

@marcyg921
Glad it went well and was as expected, relax and enjoy the not being under attack thing xxx

@doubleo7hud
As a newly diagnosed, it’s important to learn from the off not to ‘wait to be offered’ just tell them what you want and be prepared to defend your case.
Differing teams seem to follow different ‘plans’ some regard Lemtrada as ‘the first line of defence’ against MS – the most proactive way to protect brainhealth and halt the progression and subsequent disability.
Others regard it as a ‘last resort’ treatment when everything else has failed and you’ve now reached the point where ‘you’re bad enough and have accumulated suficient damage to warrant thinking about a ‘big’ treatment’ – which if by then you’ve lost your ability to work / walk / function well – quite frankly is far too damn late !!!
You’re already a friend if you wsnst to talk I’m happy to share contact details xx


doubleo7hud
1 year ago

@tracyd made me chuckle the As a newly diagnosed bit dunno why, even get labelled when your a disabled ? by other disablists ? Think iv made me mind up already about lem without really thinking about it or putting more than a few minutes thought into it if I’m honest. Will try me best to push for it when I get to ms clinic. And tar much for help and advice your a bloomin diamond ? lass.


vivy0511
5 months ago

Hi @marcyg921 ! I am really glad to hear that R1 went well! I am due to start Lemtrada some time this year (depending on the waiting list) and I was just wondering how you are feeling now? Is everything ok with your blood tests etc? Did you have any relapses?

All the best,
Silvia


marcyg921
5 months ago

Hi @vivy0511,
So far everything’s fine. No relapses or any infections have happened since Round 1 and none of my previous symptoms have returned or got worse. I don’t get the results of my blood test as my Doctor feels there’s no need unless there’s something wrong. But as for how I’m feeling right now, mentally and physically I’m fine but I still take it day by day and I try and think of ways to keep myself occupied and for ways to help improve my body but the most important thing is that I don’t feel the need to worry.

Best of luck when you go for Lemtrada, it was a long journey for me but so far it’s definitely been worth the hassle.

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