kitty369 05/02/18
Last reply 2 months ago
Lemtrada treatment – what to expect

Hi

After some practical advice from anyone who has had Lemtrada on a day case basis.

I am due to start next week, I have a letter saying I need to be there at 7.30am on Monday morning and that’s about all it says…. πŸ˜•πŸ€”

We live out in the country and have 2 school aged children and I really need to work out the plan for each day.

Will I have to be there at 7.30am every day?
What time can I leave?
Should my husband stay with me?
Will I be able to β€˜do’ anything afterwards or will I be wiped out?

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noelie
2 months ago

@kitty369

When do you start your treatment? How far is your hospital from home? Don’t plan to do anything else while on treatment. My guess is that you would feel guilty resting at home so I would recommend staying in a hotel near the hospital where you have nothing else to do but rest, and you’ll need to rest, during and after treatment. Did I mention already that you’ll need to rest? Do you have family or friends that can come and help for a bit? We are all different but I think for me, just the responsibility of having to think of planning a meal was too much.

Here’s what should happen during the day: they put a canula in your wrist, they do the steroids intravenously first, then alemtuzumab, when you think it’s done for the day, they give a flushing (just saline solution), the whole process can take up to 8 hours. They come and do observation every hour, (blood pressure, temperature, pulse, oxygen level), you need to drink a lot to eliminate the medication waste, and to keep away the headache (have some paracetamol with you).

The steroids keep you awake at night, (some hospital provide sleeping pills, others don’t so I advise to get some prescribed by your GP beforehand). A common reaction on the 3rd day is the skin rash, antihistamine will calm it down (see sleeping pills above: same advice, or it might be available over the counter). Lots of people report feeling very tired from the treatment, as i was already a zombie (my daughter has always been a terrible sleeper), i didn’t quite notice the difference πŸ˜€ Bring some entertainment with you, some funny book or something, the days are quite long. The canula stays 24/7, after a while the vein can become sore, so they’ll switch to the other wrist.

I hope that helps. Good luck x


kitty369
2 months ago

Thank you for this, I start on Monday the 12th.

I do have family and friends, but wasn’t planning to over involve them my husband will be around and is very capable.

This is really useful, thank u so much I have a bit of a cold today as well so might try and get my bloods taken again this week and will look into sleeping tablets while I am there.

When u say th days r long, can u remember what time u left each day?

Thank u for your help

So the canula stays in all week? 😳 think I might struggle with that….


noelie
2 months ago

I would say 4pm at the earliest. Obviously it depends when they start you off in the morning. In my case, all patients had to be out by 5pm, so staff made sure we were done by then. I suppose every hospital has their own rules.

Don’t worry about the cannula, it’s not as bad as it sounds, just need to put a glove on for showering so it doesn’t get wet.

Look after yourself πŸ™‚


marcyg921
2 months ago

I’m currently in Hospital for my 2nd Round of Lemtrada and even though I’ve been an inpatient for both rounds, I’ll give some advice on what to expect.

On Day 1 it is a long day, and I mean extremely long. I was here at 8am and I didn’t get started until 11-11.30 so bring some entertainment with you to make the day go by quicker. You started off on an hours worth of steroids then about 4 hours of Lemtrada from which you’ll be monitored every half an hour then the flushing begins and once that’s done you’ll be observed for a further 2 hours. I would recommend bringing an overnight bag because even though you should feel fine, if they find anything wrong they will keep you in to observe you overnight.

The rest of the week is pretty much identical, if you do go home try and get to the Hospital the next day as early as possible just so you can get finished as early possible. As mentioned above, the most common side effect is a rash which isn’t that bad but can be very itchy but they’ll give you something for it.

Come the end week expect to be really worn out from this as it is a powerful drug so try don’t try and drive yourself to Hospital even if you feel fine, the risk just isn’t worth it, try and arrange other transport or stay in a hotel close by but overall try not to worry too much about the week, it can be quite worrying but it really isn’t that bad, just extremely long and boring but once you get hooked up you’ll be thinking to yourself ‘is that it?’.

Once the week is done you will need to put yourself first which can be hard considering you have 2 children and you’ll wanna continue to do everything for them but really listen to your body because the more you push yourself, the longer recovery will take. If you feel tired, rest, if you feel any symptoms come back, phone your Nurse for guidance but don’t ignore them or let them make you feel you are week. We’re all different when it comes to MS and Lemtrada and even if it takes you a month to overcome it then so be it.

Best of luck with Round 1 πŸ™‚


tracyd
2 months ago

@kitty369

The hospital where you are getting your treatment will be able to give you guidance specific to them, the early start is pretty standard, and the protocol of the infusion takes 6-8 hours usually with steroids, flushes, lem, more flushes etc. They may slow down the infusion if it needs to be done (the body can get a little cranky when you squirt more fluids into it that it usually contains)

The steroid side effects are the one that hit the most, sleep disruption (which in turn made me tired, cranky, made symptoms feel worse)

Rash day is around day 3/4 – it itches like a bitch – as soon as you notice yourself scratching call for the anti histamine straight away – don’t try to tough it out and whatever you do don’t scratch it makes it soooooo much worse.

The rash / itchies can last for a few weeks – I found an extra drowsy anti histamine about an hour before bed helped on 2 fronts – sorted the itchies and counter acted the steroid sleep disruption by knocking me out πŸ™‚

You have a friend request – If you need someone to talk to I’m happy to share contact details on PM xxx


kfen150
2 months ago

I just finished the treatment on the 29th. I didn’t know what to expect either and didn’t ask. The first day was the worst for me. I was so tired I had to be wheel chaired to the car. MS effects my legs the most and I just couldn’t walk.
I guess I was lucky. The prednisone didn’t keep me awake. I slept just fine with two benadryl. I had no side effects and went through it just fine.
I arrived at eight and left by no later then four thirty. You will need rest it will wear you out. I wouldn’t plan on anything during your week because you wont be able to do much of anything. Like I said I guess i was lucky I had no adverse side effects and was able to sleep just fine.
I went into this blind and scared. But after the first day I was fine. It is nerve wrecking before you start because you read about all the side effects and the worst of the worst from what you are given to read and what the doctor tells you. I thought I was going to be this useless chunk of human but I wasn’t I was able to do a lot.
I am glad I did it and now I feel good. Just have an open mind and stay positive. Yes it sucks but look at the long run. I hope to be out of my walker soon.


kitty369
2 months ago

Thank you for the information and advice it is so helpful, it all feels a bit unknown and uncertain and just having some information helps.

I am going to stock up on meds to help with itches and aches.

I am nervous about the steroids as i tried them when I had a relapse once and I felt terrible, not just physically but I felt like I was going a bit crazy 😣☹️

Hope you got walking soon kfen150 πŸ™‚

Feeling a bit scared about it and friends and family keep asking me questions about it which just makes me anxious.


kitty369
2 months ago

Finished and survived day 1 round 1. In at 7.30am bloods, consultation and hook up got discharged at 6pm and cannula free for the night πŸ˜€πŸ‘πŸΌ.

Lots of sitting around (boring, boring, boring) and several hot flushes and wobbly feelings but generally not bad.

Thanks all for all advice so helpful, sleep for me now ready for the second dose in the morning x


lilbird
2 months ago

Thats great @kitty369 😊 best of luck form the rest of the week, here’s hoping it all goes beautifully smoothly & you can look forward to a more positive future! 😁


kitty369
2 months ago

Finished the week and in recovery now. For any potiential new Lemmies thought I would share the main points of my experience.

First few days were ok, maybe the mixture of steroids and meds but i felt fine.

I spent lots of time drinking water thinking about it flushing the bad cells out of me and rebuilding new ones.

The days were long 7.30am – 6pm. Usually hooked up around 11am after seeing Dr each day.

I struggled from Thursday, felt sick, fed up with infusion lines and needles and just felt generally unwell tired and tearful. I also came out in hives which were treated with piriton.

Friday I got home and drank and slept, felt bloated and my legs and feet were swollen.
Had a shower which felt like running a marathon πŸ˜‚

Weekend is a blurr of my husband giving me soup and tablets mainly in bed and more sleep 😴😴😴

Today (Monday) I am returning feeling better more awake still weak, but not on pain relief every 4 hours πŸ‘πŸΌ.

I am now on a mission to rebuild a shiny new immune system so eating healthy and drinking lots of water.

It’s hard to tell if MS symptoms have been effected yet as my body is still is drug recovery. But I do know my walking got better on Tuesday which may have been steroid related.

Good luck anyone starting soon I would recommend drinking lots, u can take your infusion line to the loo with u and the movement helps with the numb bum πŸ˜ƒ

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