Hi people,
I was diagnosed in April this year with RR MS. I had my first symptoms in January this year. Basically started with word finding problems and resulted in an ability to form a sentence. I knew what i wanted to say but mixed up my words and could barely verbalise others. No other symptoms. I relapsed in June this year. This time with leg jerking and blurred vision. Throughout this year I have also had major fatigue and problems with memory and concentration.
My consultant wants me to go on alemtuzumab. By passing all the usual drugs. This is apparently because Despite a recent diagnosis, my symptoms have been severe and aggressive. Has anyone been on this drug? Any advise would be appreciated and anyone who has been on the drug who could give me their thoughts on it- would really help.
Thank you!
Danielle
I have no personal experience of this drug but there is a blog I follow called ‘Stumbling in Flats’ . Google her. She was diagnosed a couple of years ago and she started her blog to help her cope with her aggressive ms after diagnosis and subsequent treatment with this drug. She is very pleased with the outcome regarding her ms. Excellent blog.
Also known as campath or lemtrada if Mr Google is correct.
Jan x
Thank you!
Yea that’s right Jan. Thanks x
hi danielle
go for it!
alemtuzumab sounds fantastic.
i asked my consultant if i could try it but it hadnt been approved by NICE at the time.
good luck
carole x
hi Danielle I start it nov 3rd let you kbow how it goes pen xx
This drug is very expensive. It’s over £50.000. Thats why it is not offered normally unless they need to hit the ms hard.
It is not available yet at my hospital. You may need to travel (cambridge?/London?)
This is the best drug we have for ms. It comes with some side effects.
In general - the stronger the drug - the more side effects.
You have to ‘educate’ yourself on these side effects and make a decision based on how ‘active’ your ms is and how bad the side effects are.
This drug has been known as ‘campath’ previously and also ‘alemtuzumab’. It’s now known as Lemtrada. It’s been developed over a ten year period (from what i have read)
Find out as much as you can from neuro/nurse/ms society/ms trust before you make your decision.
Good luck! and if you go ahead - come back and update us.
Take care
Teresa.x
Thanks everyone! My consultant is adamant he wants me to have it! I think there’s a waiting list. Seeing him
Tuesday so I’ll let u know how it goes!
Really scared as it depletes ur immune system
by targeting your T - cells. I’ve done my research im
going to go for it . If this stuff can halt the MS it has to be worth it x
Good luck with it and please keep us all informed on how things go.
Jan x
Lemtrada is a first line therapy.
Who is eligible for Lemtrada?
Both the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) have issued their final guidance on Lemtrada. They have recommended that Lemtrada be prescribed on the NHS in England, Wales and Scotland for adults with active relapsing remitting MS. ‘Active’ is usually defined as two relapses in the previous two years.
From September 2014, hospitals and NHS Trusts in England and Wales will have to prescribe Lemtrada to all people who are eligible for it and who choose to take it. While in Scotland the NHS does not have the same legal obligation, there is a clear expectation on Health Boards to make SMC-recommended treatments available.
Decisions about whether Lemtrada will be available in Northern Ireland are expected later in 2014.
Hi there,I have had Campath (as it was known then) and would be happy to tell you about my experience of it (all positive so don’t worry!).Please feel free to send me a DM if you would like to chat x