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Starting Lemtrada, feeling apprehensive

Hi.

I’m starting Lemtrada next week on Monday and am feeling apprehensive/concerned about it. I’ve previously been on Tysabri for the best part of seven years plus, but I had to come off that because the increased risk of PML was great, it went from the possibility of me having PML being one person in 1,000 to one person in 100 and that was just a bit too scary for me. I then went on to Fingolimod but that didn’t work, and so I’m starting Lemtrada next week.

At present I am having problems with my MS, my hands and feet are numb and painful with pins and needles and I also have a severe MS hug. I can’t see properly, my eyes are blurry and my balance is completely off. I feel dizzy all the time so I don’t know what is going to happen but I’m hoping the Lemtrada will help long term.

Has anyone any experience of Lemtrada? What were the main side-effects you experienced please? Did you have positive results?

I am nervous about it. I haven’t posted in here previously and am unsure where I should place my post. Thank you for reading my post.

Hello Rach

Sorry, I’ve not got experience of Lemtrada, I just didn’t want you to feel abandoned.

You could do a search on the word Lemtrada (the box is just above the list of existing threads). In particular, you could look for posts written by Katy79. She’s had her 2 courses of Lemtrada (I believe) and has written quite a lot on here about her experience.

You could also have a look at the https://shift.ms/ Forum, there are a lot of Lemtrada users there.

Best of luck for Monday. I’m sure it will be a good move and hopefully one that will defeat relapses for years to come.

Sue

Hi , I’m 6 months post round 2 and so far all is good, no relapses, no change on my last MRI and I haven’t gotten any worse disability wise, so I can’t complain. My MS was very aggressive and I was having back to back relapses , so I wanted to hit it hard, I believe Lemtrada does that.

As for side effects, during round one my heart rate dropped briefly, I had the rash , was glowing a lovely shade of crimson and I found the whole 5 days exhausting. Round 2 was a breeze, just the rash, nothing more.

Other than that I’ve been good, My blood tests have, so far, all been fine (the monthly blood tests are a pain)and Some people do have a tougher time but I honestly wouldn’t hesitate if I needed a third round.

Good luck and try not to worry, I’m sure you’ll be in good hands.

June