Campath / Lemtrada

Everyday living
1

Has any one tried Lemtrada / Campath.

Thinking of pushing for this and wondered if anyone has any experience of it. Cheers

2

Hi Tony,

i have been offered either Tysabri or Lemtrada. I can’t make my mind up. I’ve had the blood test and I’m JC+ but could still go on Tysabri for two years. I would then need to go on something else. Or should I go for Lemtrada? It’s so difficult trying to choose between them. You have to have active MS to be offered Lemtrada and highly active for Tysabri. I’ve had three relapses in the last year and so qualify for both. I have to let my Neuro know my choice this week. If I choose to have Lemtrada, I could let you know how it goes, if you wish.

Amily x

3

Thanks

4

Hiya

First of all, taekwondo?? I love it lol

Back to the question, I’ve been researching lemtrada for months now and decided I definately want to go on it but my neurologist is being an arse so I’m off to London later today for a private consultation in the hope that this consultant will say yes then I can get the go ahead for the treatment on the nhs.

I’ve been following blogs of people who have had lemtrada and am certain this is the way to go for me having been on tysabri and becoming jc positive. My ms has been described by the docs as rapidly evolving, severe so I’m desperate to try and put a halt on progression before its too late (hence me going for the private consultation).

Do you want me to get you the links to the blogs etc?

5

Hi Lorna,

yes please. Yep TKD is for taekwondo started training 10 years ago just as the MS started, managed to get a black belt and still train and teach. Unfortunately the MS has slowed me down but I feel that the training helps strength and balance.

let me know how it goes with the treatment.

tony

6

Hiya

I started training 6 months after diagnosis. Ultimate goal to get to black belt. I’m now 3rd kup & hoping to get well enough to carry on. I pushed myself by entering tournaments too & managed to get 2 medals which i will treasure as they mean so much! It’s great that you teach :slight_smile:

Here’s some blogs to look at

http://lemtrada.blogspot.co.uk/?m=1

http://www.davidscampathstory.org

Some are easier to read than others. This one is a blog by professors at Barts & the London, they update it every day and you can search for lots of info on lemtrada -

My appointment with the consultant yesterday didn’t go as planned. His hospital won’t be treating anyone with lemtrada until at least the end of the year and then there will probably be a long waiting list. So I’m still fighting to get on it :frowning:

Lorna

7

Hi,

i have been advised to try tysabri, or Lemtrada as I’ve been found to have ms activity in a recent mri scan! I’m currently on gilenya, and it’s all a bit frightening! Has anyone tried the Lemtrada/ campath yet please?

any advice? Side effects?

thanks for any help!

8

Hi guys,

I have had three lots of Lemtrada,everyone’s journey is different but if I can be of any help in terms of advice or experience then please feel free to send me a DM x

9

Hi guys I’ve had my 1st intervenous drip of lamtrada hooke x up to all machines now xx

10

I have just arrived. New Boy of 74. Only had a short time on Baclofen and carbamazapeine. I do the oxygen treatment. Just got the new car on Motability. Testing out the Drive Assist. Great fun watching the steering wheel turn. :))

11

Hi, just come out of hospital from my 3rd lot of Lemtrada so not feeling too great at the moment. If given the chance go for it. It’s made a big difference to me and my quality of life.

Crackers