Last reply 1 month ago
Preparing for round 1 – Lemtrada

I have at last got a date to go in for round 1 of Lemtrada – whilst I am sure it is the right drug for me, I am feeling pretty scared and unsure about what I am going to feel like over the 5 days in hospital! Any advice, hints and tips would be much appreciated
Thank you x

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tomlev
1 month ago

Hey Sarah, I hope it is a ‘walk in the park’ for you, it was for me and was lovely to sit down and chill out for a week,
good luck & enjoy 😊


sammy93
1 month ago

@sarahwestwood I didnt realise you were from Birmingham too! Are you going in to the QE for your treatment, and are you staying overnight or going back in every day? xo


speedymcgreedy46
1 month ago

I had my first round of lemtrada in March. I was nervous as hell as I’d been reading up on all the complications and reactions to the treatment. The worst part for me was having the cannula in as I have a needle phobia. Turns out id worried for nothing. The only thing I can say is that i was bored. After the week, when I was back at home, the fatigue kicked in big style. But everyone is different. I have to say that I’m glad I went for the Lemtrada though….I can do things now that I couldn’t do last year.

Today was the results of my 6th monthly blood test following the treatment and my lymphocyte count is 1.0. Very pleased.

My advice is to take something with you to keep yourself occupied. The infusions take around 6 hours each day. Books, crosswords etc. If you feel anxious, talk to the nurses. I had mine done in the QE in Birmingham and the nurses were amazing. Talk to the other patients. Share your stories and experiences. It’s good to talk with others who are able to understand what it’s like.

I have to say that the experience was nothing like I was expecting. The only issues I had during the infusions was a bit of a rash that appeared on the last day but had cleared up after the flushes.

Oh…and when they give you the antihistamine and anti sickness flushes…enjoy it…It gave me the giggles 🙂

Good luck fellow fighter. If you need/want to and can…message me on here if you want to talk further. Xxx


lacemister
1 month ago

Hi I felt the same very nervous doubted my choice and feared the worst. I have today just had my first monthly blood test.
My 5 day infusion was uneventful all the nurses were very relaxed. I drank lots of water and ate well.
On the Saturday after I was tired but since then I have been back to work and feel absolutely fine.
I am pleased with the treatment and feel incredibly positive.
Good luck your doing the best for you and your future !


pjohnston
1 month ago

Hi, I am right there with you. I start my infusions on Monday. I am starting the heavy water drinking today. Still… pretty excited and scared at the same time.
I hope you do really well with it!


sarahwestwood
1 month ago

Thank you all for your comments and support, feeling a lot braver about going in now! XOXO


marcyg921
1 month ago

Hi just seen this. I’ve had both rounds of Lemtrada and I wouldn’t say it’s a walk in a park but its definitely alot easier than what it may seem like. My side effects were; metallic taste, headaches, rash, high pulse rates and a very bad case of fatigue. Apart from the fatigue, none of these symptoms lasted very long and don’t forget they can always give you something to help with any side effects you may experience. The real test comes after the treatment where you really need to pay attention to your body and make sure you don’t try and do too much and get plenty of rest and drink plenty of water. After Round 1 I went back a week later and I ignored the warning signs my body was sending me and I crashed and I ended up so exhausted I relapsed with my depression. After Round 2 I took more time off (even if I felt I didn’t need it) and took my time and things went so much smoother. So listen to your body, take as much time as you need and don’t worry if things seem a bit low for awhile, its a very strong treatment that takes so much out of you but it will get better.


pecpinto
1 month ago

Hi everyone,
I´m from Portugal and I would like to Know how long it take form prescription (Lemtrada) to the first infusion.
wish you all the best
Pedro


stumbler
1 month ago

@pecpinto , there isn’t a single answer. It all depends on the medical system that is prescribing it and how efficiently they manage their bureaucracy.


pecpinto
1 month ago

@stumbler, thank you, my question was how many and what exams must we do prior to the first infusion.


sarahwestwood
1 month ago

@pecpinto mine has been reasonably quick, albeit it has felt like a long journey so far – I had to have a second MRI of my spine (so 2 in the space of 2 months), and a number of blood tests and other tests during neurologist appointments , after these results and seeing my neurologist again (which has taken about 4 weeks in total) it has been another 4 weeks before my first treatment (3 weeks now before I actually go in)! As waiting times go here in the UK, this really is a pretty quick turn around, but at times the wait has felt very frustrating! Unfortunately I have had quite a few relapses in the last 18 months, and I do think speed of treatment is completely dependant on sign off approval for each individual – I guess the strength and cost of this treatment means every box has to be ticked, which causes the delays! Hope you get some progress soon and do keep in touch with how you’re getting on x


sarahwestwood
1 month ago

Thanks everyone for your advice and experiences – I’m stocking up on some books to take in – hopefully curb the boredom and treating myself to a new water bottle to keep myself as topped up as possible! 🤞


jodieb
1 month ago

@sarahwestwood I hope your first round of Lemtrada has gone (is going) well? I’m due to start my first round at the end of November and it’s reassuring to hear everyone echoing my feelings of that odd mixture of excitement and nervousness. Fingers crossed for you for a smooth run x


pecpinto
1 month ago

Thank you all for the support !!
Best wishes to everyone !!


sarahwestwood
1 month ago

@sammy93 I live near Birmingham but having treatment down in Gloucester – going in daily as an outpatient, which apart from the travelling, being home to my own bed with my kitties every night I think will be better x o x o


ginger85
1 month ago

Hi sarah+everyone
I am waiting for a date to come through.
For my first round of treatment, of lemtrada.
I really hope your treatment goes well for you Sarah . Make sure you rest as much, as possible. Take care of yourself. Sending hugs x.
having to rest and sit still for 5/6 hours. Lol! Will be difficult for me. I’m not very good at that.

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