krisp 05/04/15
Last reply 3 years ago
Upcoming treatments & research

I was wondering out of all the ongoing research and treatments in trials etc, what’s giving everyone the biggest hope etc? Or what to everyone looks most promising?

I understand lemtrada campath is the current big gun and I hope it gets better and keeps on working for everyone, but other than that, what’s everyone pinning their hat on?

For me it’s the charcot project with the ebv theory and the retrovirals used to treat HIV.
Gnbac1 which is a similar process being done by GeNeuro who have been bought out for millions due to the early signs of this drug.
And Biotin for the progressive variants, which has results being posted April 24th which should be interesting.

Anything I’m missing?

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stumbler
3 years ago

There’s so much going on in the Stem Cell research arena.

Take this one for instance, possibly a bit over-the-top calling it a miracle :- http://www.nhs.uk/news/2015/03March/Pages/miracle-stem-cell-treatment-for-multiple-sclerosis-reboots-immune-sytem.aspx


hollylb10
3 years ago

My sister works in pharmaceuticals and keeps telling me about a drug Novartis have called Gilenya (I think) I have not looked into it but she has done a lot of work on MS drugs and tells me that the new DMD calm inflammation as well as reprogram parts of our immune system, this obviously holts the disease…..but for how long is the question.


krisp
3 years ago

Yeah there seems to be a lot being done on stem cells and like you say differing reports but it seems to be goin in the right direction
Gilenya is also good, I think lemtrada alemtuzumab is the newbie above that again though


hollylb10
3 years ago

Yes I told my sister I wanted to try lemtrada and she said it is a very aggressive treatment that shows more complications than some of the other options, I think it was recpiratory infections or something like that. These drugs also cost in excess of 30,000 a year and some clinics won’t pay out for them which is just awful in my opinion. So some people are refused this drug because they are told it is not suitable but really it’s because they don’t want to pay for it! I may also be getting some reports on these drugs so it is good having some inside info and advice ☺️


mary-annpearson
3 years ago

I am exploring trying stem cell abroad i recently started tecfidera but this is the worst i have been. Any thoughts on stem cell


krisp
3 years ago

Hi Mary

Where are you thinkong of going?
I’ve read a lot about the different places prices etc, there are a lot that rave about Dr Fedorenko in Russia, not sure about waiting lists etc and it’s always difficult to guage what’s truth and what’s sponsored out there.
I know there is a woman who’s just about to have it done in Russia and she’s on facebook discussing the raising of money etc.
it may be worth you having a look at that?


mary-annpearson
3 years ago

I am looking at austria will now look at Russia thank you. I feel the same about claim these clinics are making what is truth and what is promotion


krisp
3 years ago

Hi Mary
It seems Russia is one of places a lot of people go to, I know a lot from Australia go there as it’s not approved there yet, I think the Dr Fedorenko is quite well renowned too
If you google HSCT for Ms you should come across the clinic in Russia, I think the price is ok too especially with the way the euro is currently!
And I think it’s the non-myeloblative surgery that they do which is supposed to be less risky


mary-annpearson
3 years ago

Thank you i am now reading about the clinic

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