Last reply 1 week 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
3 months 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
3 months 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
3 months 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
3 months 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
3 months 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
3 months ago

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


marcyg921
3 months 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
3 months 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
3 months 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
3 months ago

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


sarahwestwood
3 months 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
3 months 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
3 months 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
3 months ago

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


sarahwestwood
3 months 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
3 months 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.


milli
1 month ago

Dear all, hope all is well with you. I am in the process of informing my decision on DMT. I have given choices for Lemtrada or Occrevus, and now I am psychologically almost ready for taking Lemtrada. On a corresponadance, my MS nurse suggested starting after Christmas in January.

Family and friends advices not to start in winter, that perhaps spring/summer is best since there is less chances of getting illnesses related to winter that could be very dangerous once we are having a suppressed immune system (especially I hear the first three weeks). I have a holiday booked abroad mid February and I guess being on airplane is not ideal after treatment! in general there is never a good time,…

1- How did you all choose the time of starting on Lemtrada?

2- Howe long did you have to be careful for not getting viruses etc from perhaps winter related illnesses or any contagious illness from others,… how can we protect ourselves! apart from being careful for not eating food with Listeria complications,

3- How soon did you start normal life and social life, exercise, going to public evets? for how long does one have to be careful?

4- Is there any specific diet that can help us rebuild the immune system back again? after wiping our B and T cells after the treatment with Lemtrada?

I’ve got zillions of questions, but I stop here now! ;0)

Thank you for reading this very long text! Any input and advice, greatly appreciated :0)


sarahwestwood
1 week ago

@milli sorry for such a late reply, it’s been a couple of months since I’ve logged on! I have to be honest I’ve spent the last 2 months with a very poorly husband (full of cold) sick people around me daily at work and I still have not been poorly! I went straight back to work after treatment and other than several UTIs I have not been poorly at all! I have started going back to the gym and swimming (about 7 wks post treatment) and off to Vegas in a week! I’m sure this isn’t as positive for everyone, and I’ve had very bad ms days but so far so good! I’ve started taking amitripyline tablets at night which has improved my night ms pain and making me sleep better which I’m sure improves my days and gives me the energy to exercise – I do believe regular exercise massively helps ms generally!
I’d say there will always be no good time because of life events, weather, etc but bite the bullet and you’ll get through it just fine!
P.s A kind lady on this site sent me blood monitoring templates and I now track all my monthly stats which helps me mentally to know I’m in control – pm me your email address if you would like the templates
Good luck and keep us posted x x x x


smurf69
1 week ago

@sarahwestwood, sorry to jump on this, but I’ve sent you a friend request as would be grateful for the template please ☺️
I’m currently in the process of choosing a DMT and think I’d benefit from the template if I choose lemtrada.


milli
1 week ago

@sarahwestwood thank you so much for your kind reply and information Sarah. I’m starting my Lemtrada treatment this coming Monday and all your info and other communications here, have helped me massively to choose this DMT and now to prepare for the big week,… now it’s the challenge of surviving germs and bacteria with my young child that goes to school and brings back whatever she gets exposed to,… lots of hand sanitizers, masks etc to survive ;0) second challenge to eat a listeria free diet for three months and eating the right immune system boosters to get the while blood cells improved! But fir now let’s survive The first treatment phase starting on this coming Monday, without catching any bugs and germs etc,… let’s see what happens!

Thank you again Sarah and I’ll send you a private message for the blood monitoring template shortly.

Many many thanks and I’m glad to hear all has gone well for you. Keep up this great spirit and prayers for healing and great health for you. All the best :0) xx


sarahwestwood
1 week ago

@milli sorry I didn’t get the template to you today – work was crazy busy – but will def send Monday am – I spoke to my ms nurse during my treatment week about the fact I wanted to monitor the results myself and they were very supportive and the months inbetween my appointments they post out the results report so I can fill in my spreadsheet! Try and stock up on barley water – us ladies do suffer with UTIs post treatment so found that and peppermint tea does help a little x x x


sarahwestwood
1 week ago

@smurf69 pm with your email address and I’ll send on x


milli
1 week ago

@sarahwestwood thank you for all info :0)
I have this weekend to prepare for my first round Lemtrada treatment starting on coming Monday ;0) it’s the final countvfuen ! ;0) so as per your advice, Barley water and mints will be on my shopping list today and I’ve been drinking lots of water these days and Almost drowning ;0)

I also have developed a sore throat and mild cold over last few days so not sure how does this effect my Lemtrada treatment or if it is still safe to go ahead! I hope the nurse on Monday will advice me further!

I’ll be most grateful for the template when you get time, during the week. No rush and again a massive thank you in advance :9)

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