anxious123 28/04/17
Last reply 1 year ago
TECH OR LEMTRADA

Following my post this morning i have received my apt with neuro…givem he has already said it is highly likely to be ms and advised if it is i will have a dmd i have been researching…i wondered of anyone could provide their views on tech pr lemtrada? Have you found them ok and have you had relapses or progression whilst on them.

I really want to avoid injections but any views would help.

Thanks

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reds44
1 year ago

everyone reacts different. Do your homework on both write down your questions and take them to you appt.


lilbird
1 year ago

Hello again @anxious123

I would highly recommend you read @tracyd‘s blog for insight into Lemtrada there are loads of links on shift somewhere ☺ it’s also available on Amazon for kindle.

I’ve personally found it pretty good so far, I’ve recently finished round 2, & I’m feeling optimistic going forward. Sadly I can’t offer any insight into other treatments as this is the first & only treatment I’ve tried but so far so good 😉


tracyd
1 year ago

Hi thanks for the tag. Like @lilbird I can only help with ,Lemtrada it the only treatment I have had since I was diagnosed in 2014. My experience is fully documented as a public blog and year 1 is on amazon as an easy to read ebook (details on my profile with all monies coming here to ,SHIFT
My best advice ….. Go to war tech can slow it ….. Lem can shut it down
You don’t fight fair you fight to win
Stop this MS nonsense in it tracks don’t wait until it is ‘bad enough’ you kick it squarely in the balls and beat it to a pulp and watch it bleed and cry
You have a friend request I’m happy to share contact details for a chat or a big bitchng session xxx


anxious123
1 year ago

Thanks all…..do you think i will be offered the choice of either as first drug? With Lemtrada do you recover quockly from the four days in hospital ? And is it just 2 courses a year apart or does that only last for a certain number of years?


tracyd
1 year ago

@anxious123
Lemtrada is two lots of infusions a year apart and that’s it you’re done with MS treatment
If in the future MS came back you could have another dose or something else but it is designed to stop MS dead in its tracks.
As for ‘being offered’ – don’t wait to be offered anything in relation to your MS tell them what you want and fight for it if you need to. xx


juliam58
1 year ago

I started Tec last summer but it didn’t agree with me; felt nauseous all the time and had various tummy issues although if that was going to happen to. 1 in a hundred it would always be me! I had only decided on Tec as a temporary measure anyway until Ocrelizumab became available but as it doesn’t seem to be any time soon decided to go for Lemtrada. Even though my MS hasn’t been too bad my consultant actually suggested it to me.
i had round 1 20th -24th March and for me there have been no problems. I think the worst things were lack of sleep in hospital ( I really don’t like being woken up at 6 to have my blood pressure taken!) and the difficulties the nurses had in getting the cannula in ( ouch!)
I am now back to how I was pretreatment if anything slightly better with possibly a bit less fatigue. Certainly at the moment I am so glad I went for Lemtrada.

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