March 16th BBC NEWS HEALTH - DR ELI SILBER
My friends have been emailing me about this programme with this news - Good news for people with RRMS - but not for me SPMS. [lts so difficult to explain to your well meaning friends that you have the wrong type of ms] Never mind - should be good news for many.
This has been approved by NICE. So google it.
Dr Silber is from Kings College Hospital London.
Don’t get too jealous; the majority of people with RRMS won’t have the “right type”, either.
You need to have “highly active” RRMS, not just the run-of-the-mill kind. It also looks like you will have to have had a lack of success with the standard injectables, too.
Yes, the list of qualifications for the new drug is quite long it seems - also only available if you live in England and Wales just now. Won’t be holding my breath for it.
Luisa x
yes it seems that lots of people dont fit the critera for this new pill
i saw my neurologist in december and from what he said to me there woould have been two injection types that would have had to have been not right for you then it would have to be highly active
by this time i beleive you would be at your wits end hoping that something would go right for once then oh its too late your now not classed as rrms sorry xx
sami do i sound sad or what !
Yep. It’s not just a simple case of er… I think I’ll take a pill now rather than inject. If only it were so simple. Why do you have to get to be so bad before being offered it? Cost?? Ummmm. Roger.
lf you watch the BBC programme - the lady with MS - does not seem -well at least from what l could see- in a ‘bad’ way.
They are asking for people to trial it.
Hiya,
It was on Central news at 6pm Thursday as well. I have already had both sets of parents and friends contacting me saying how great it is that they have found a cure for MS !!! Its so frustrating that they can’t get the facts right
Its good news for people with RRMS but what about us buggers with SPMS
John
Dr Silber is my consultant! I will get the low down when I see him next
Dr. Silber is my one too, nice to see him on TV
Yes I am pleased for those who qualify but have already been told that I’m S/P and the only dmd I’m allowed is Betaferon. Still I am lucky to have that, so many of my friends are too far advanced with the disease when dx.
I did read that they are carrying out tests with Tysabri and people who are S/P. Having spoken with a young man who told me he was on Tysabri and has been given the dx of S/P and is in a wheelchair, I am not surprised by this. Especially as it helps with progression as well as relapses.
Love Wendy xx
Hiya Wendy
I am just been screened to go on the trial for Tysabri in SPMS at the QE in Birmingham
John x
Interesting John thanks for that
Wendy
x