Last reply 9 months ago
1 Mo. 2 weeks after rd 1 of Lemtrada

Hello everyone, haven’t posted in a bit, it’s been 1 month and 2 weeks of Lemtrada. I remember I was so scared of getting Lem and the side effects and infusion reactions, but thank God it wasn’t as bad as the horror stories I’ve read online.

The infusion was easy for the most part, I would get very itchy but that would stop once the nurse gave me Benadryl, the nurses at the infusion center were all so nice. One week after the infusion, I started to get extremely painful headaches with throbbing pain at the temples, it was so painful that I had to go to the ER. The ER doctor said that this was a common reaction with some infusion meds, to experience headaches one week after infusion. She put me on a regimen of ibuprofen and Tylenol every four hours. This lasted about 4 days and then the painful headaches went away.

I do feel a little more weaker then before Lemtrada, maybe by like 10-20%, but this again seems to be a common reaction that doesn’t last. My MS nurse said that at the one month mark is when many of my lymphocytes are completely obliterated so it’s common to feel tired. I also had someone from Lemtrada come to my house and take a blood and urine sample, she was nice as well.

I’m hoping for the best and I’ve read great things about this drug from so many people. There are people with halted progression, clear MRIs, people becoming active again. It’s definitely a journey and not a quick fix though. My MRI is due next year in January so time will tell.

I’d love to connect with more Lemtrada patients as well and hear their experiences, so please feel free to post and tell me about yours. XO

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9 months ago

Thank you for describing your lemtrada experience so far! I’m due to start my first round in 9 weeks and 1 day, not that I’m counting or anything! To say I am nervous would be an understatement but I am currently going through a pretty rubbish relapse and so I am even more certain I am doing the right thing for me! Any tips on how you got through the 5 days of infusions and after? Xx

9 months ago

@ew5514 One thing I can tell you is to properly hydrate yourself! Also the infusions can be long so bring some books, tablet or phone with you. Make sure you sleep well at home and most importantly, don’t worry, you’ll be fine and you’ll be monitored well, you’re in good hands. 🙂

9 months ago

Thanks for telling ur Lemtrada story so far am due to start on Monday n the nerves are setting in trying to stay calm for my kiddies sake so they don’t worry. Hoping it goes well when I start xxx

9 months ago

@zarah hopefully it will go well, don’t worry and just take it easy. Many people have a very easy time with this.

9 months ago

Thanks for sharing this I am due to start 20th Aug so any tips or experiences are invaluable thank you and all the very best !!!!

9 months ago

Hi I had my treatment week commencing 25/6 and felt extremely tired for the first month post treatment had bloods taken on 24/6 then found out had urine infection just finished a 7 day course of antibiotics not too bad next set of bloods on 24/8 and back to work after 3 months off (bad relapse).

9 months ago

I’m not in Lemtrada but doing ok on Tecfidera. So glad things seem to be going ok with you👍

9 months ago

I have been really lucky and have had 2 rounds of Lemtrada / campath – 10 years apart.
On both occasions I tolerated it OK. The infusion days aren’t too bad – just keep well hydrated and listen to your body. If you are developing a headache – take something for it!! Good time to catch up on all those books / magazines/ internet ‘stuff’. I did come out all red and blotchy – but again piriton seemed to keep it in control.
The next few weeks my body told me it was shattered – so again I listened. Slept loads. If I felt good I did things – shopping / walks and after a couple of times learnt to enjoy everything in moderation – always stopping before I was tired and needed a couple of hours sleep to recover!
I work full time, so also used the ‘feeling good’ times to do something different – I tried out yoga and different bits of cooking I don’t usually have time for.
Steady progress meant that I was back to work full time in 5 weeks, but again listening to my body and taking it sensibly – If I wanted to go to bed at 8:30pm that’s what I did.
Now 3 months after my last treatment I am back to my normal.
After my first round I had 10yrs relapse free -after averaging 2 a year – so really fortunate 😅
Hope this helps any nerves out there.🤞

9 months ago

I had my Lemtrada infusions for five days last week. I agree with the comments about taking entertainment to pass the time. I would also recommend taking an eye mask – I spent t quite a lot of my time in the chair asleep. I have been getting headaches but they are ok with regular pain killerss. It’s been two days since th infusions finished and I am really tired but sleeping a lot and staying home. Also, weirdly, have been craving sweet foods even though I’ve been feeling quite sick – wondering if any one else has experienced that.

9 months ago

Everyone is very different. For me, the only thing that I had happen during Round 1 of my Lemtrada infusions was nausea. (I did throw up.) That happened on the first day & I told them that I felt like I’d be fine if I could lay down. I’m Narcoleptic & I really, really, really wanted to just sleep through it. They gave me a bed after my vomiting. I slept through the rest of it. I was well enough to drive 25 minutes home afterwards. I had taken my mother with me in case I needed her for anything (like driving.) But I was fine since I slept through the last part of it anyway. After that first day, the rest of it went fine with no problems that first year. They always put me in a bed after that first day.

Everyone is very different. I don’t remember having any issues with headaches or anything. I just had the vomiting the first morning.

Try not to let yourself worry. What good could worry bring you?

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