Last reply 9 months ago
Lemtrada

Hi! My name is Brooke and I’m new to this site. Diagnosed RRMS in 2016. I am starting Lemtrada on Monday and am super anxious. I’ve seen older posts about people’s experiences. Has anyone been infused lately? I know everyone is different but I’m more concerned about the couple of weeks after the infusion. Only took off work for the week of infusion. Would appreciate any input. 😊

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bdgraubart
9 months ago

Sorry diagnosed in 2006


marcyg921
9 months ago

I had Round 2 about 3 weeks ago and as for how it went, about as well as I expected. Day 1 I had a headache, metallic taste in my mouth and my pulse went way over to the point where I had become an inpatient, get an ECG test done and for the next 2 days my infusion was slowed right down. Day 2 things went much smoother, no side effects but the treatment was starting to wear me out. Day 3 went as well as Day 2 but when I got home but boy was I exhausted, I’m someone that finds it hard to sleep before 1am but in this case I was asleep by 9pm, oh and I also had the lovely lemtrada rash.
Right now I feel fine and I’m going back to work next week but I do expect to crash any day now for when the steroids finally have left my body and I’m starting to do more things. It probably would’ve been wise to take 2 weeks off work for infusion, 1 for treatment and 1 for recovery then see where you go from there because there are alot of side effects with this treatment and it does wear you out but you never know, you might feel well enough to go back right away but just take it easy and listen to your body.

Best of luck with the treatment


bdgraubart
9 months ago

Thanks so much! That is good information. I was nervous about week 2 after reading some previous comments. So were you admitted to the hospital with your high blood pressure? But still received your infusion just more slowly? So it was still 5/3 days, whichever phase your were in.


marcyg921
9 months ago

In both rounds I had the choice of if I stayed in or not. In Round 1 I was an inpatient anyway but I experienced the same side effects but not the high pulse rate so the infuson was normal. Round 2 I wanted to be an outpatient but because of the high pulse rate (which did settle down later on that night) I had to stay in overnight on night 1 and they slowed the infusions down for days 2 and 3 so rather it being an 6-7 hour process it took about 9-10 hours so I just stayed in to get started earlier.


few3
9 months ago

Hi. I went through round 1 last summer. I think how you react depends a lot on how healthy you are (other than the ms of course). I went right back to work after and survived by taking it very easy – take the elevator rather than the stairs and get a lot of sleep in the evening. I actually used my Fitbit to make sure I was staying under 5000 steps per day. My body was extremely tired but it didn’t seem to get any better or worse based on what I did. A week after the last infusion I felt about 80% of normal – and stayed at that for a month.

During the infusions he sure to eat normally. I found later in the week that sugary foods (not a normal part of my diet) helped limit the headaches. Be prepared to rest in the evenings and not much else. The actual infusion was uneventful for me just a long day to try and keep busy.

Good luck!


bdgraubart
9 months ago

Thanks everyone for sharing your experiences! All has been helpful information. Fingers crossed that it will be uneventful.


srhp
9 months ago

Hi
I had my first infusion in January.
All went well. Had metallic taste when given steroids but foxes glazier mints helped get rid of the taste.
By the 3rd day I got the rash but antihistamines threw the cannula calmed it down very quickly.
By day 4 I must admit I was wondering whether to stop it, walking had gone a lot worse for me and generally feeling ill.
I had to look at the bigger picture and not the small one, don’t forget everyone is different. I stuck at it and came out of hospital on the Friday night.
By the Monday was feeling a lot better and my walking was slowly coming back to how it was.
I was told about listeria diet. In hospital I had toast with 2 small packets of butter. I asked the doctor if I could have them and he said because it didn’t say it was pasteurised or unpasteurised to not have it. My wife brought me a dairy free margarine tub which the hospital stored in the fridge for me.
I had the antiviral tablets and antibiotics for 1 month. Managed to get a throat infection ,GP gave me some more antibiotics and it cleared up. I finished the other tablets last Friday, so now tablet free from the hospital, just the other tablets that I had before infusion.
I had my first blood test last Saturday.
If you need any help or more advise PM me.
Good luck with treatment.


lilbird
9 months ago

Hi @bdgraubart best of luck with your infusions 😊 the only thing you can really do is take it as it comes form you personally & don’t expect to be able to push yourself. You should be fine, it is unnerving but as soon as you get going you’ll find relief in how easy it is & the nervousness should settle down. Best advice I can offer is make sure you drink plenty of water everyday, before, during & after your infusion week. It’s so simple, aside from frequent loo trips, but it makes sooo much difference to how well you feel 😉


bdgraubart
9 months ago

Thanks srhp and lilbird. The more I hear the more comfortable I’m becoming. I really need to start the water! So glad I joined the site! All of the well wishes sure makes a difference! I’m not the only one. Thanks so much for taking the time the weigh in!
😀


lilbird
9 months ago

You’re welcome @bdgraubart now quick, get a drink of water! 😉

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