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lemtrada update :-)

I had a week of lemtrada over 2 weeks ago had my 1st blood tests this week and ms nurse and neurologist are very happy with the results my platelets count is better than they expected so happy :slight_smile: xx

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hi miss p

that’s great news, well done you!

i’ve heard so many good things about campath/lemtrada or alemtuzumab as it was once known.

can’t wait to hear how well you are doing on it.

carole x

Thank carole I’m very happy hope your feeling better big hugs xxxx

Thank carole I’m very happy hope your feeling better big hugs xxxx

Thank carole I’m very happy hope your feeling better big hugs xxxx

hi miss p

physically no better but mentally much better

or happy face with painful legs!

hah! some days my words don’t work either!

thanks for the hugs!

carole x

Wow, that’s great news. I guess that means you’ll be back in the Wacky Races soon then .

Tracey x

miss pitstop - could you describe your experience a bit more please? i.e. the actual infusion process and how you’ve felt after?

I’m currently waiting to see if I can get lemtrada and might have a choice to make between it and tysabri - easy to find people on tysabri but no so much for lemtrada!

Thanks

I was the 1st patient for lemtrada in my hospital so no one really knew what to expect. You have to have to vent flows put in just incase 1 gets blocked you can use other. 1st day I had steroids via drip for 1 hr followed by lemtrada for 5 hours. Every 30 minutes had my blood pressure and obs done and when treatment stopped had obs every hour for 4 hours then every 4 hours. This was same for 3 days On 4th day and 5th didn’t have steroids just the lemtrada for 3 hours.

I did had low blood pressure but high heart beat severed with fever sore throat and sweats their all side effects but nothing major. It was more uncomfortable keeping the vent flows in each arm for the week. You do have to have bloods every morning so there was a lot of needles. overall the experience wasn’t that bad and hopefully from tests I already had it was worth it. fingers crossed I can ditch my crutches and chair :slight_smile: feel free to ask anything else xx

Thank you - it doesn’t sound pleasant but hopefully the benefits should make it well worthwhile.

Hope it all works well for you!

So glad you are feeling positive after two weeks! I start Lemtrada v soon. It’s my first DMD - I had an impressive MRI so they are cracking on. So glad my neuro seems really proactive :slight_smile: it’s good to hear from you - I’ll also be the first in the hospital x

Best of luck to you seashells hope it stays positive for both of us xx