@holtyc 

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holtyc

Mavenclad/Cladribine

Hi, My dad has Primary Progressive MS, he has been told by his neuro consultant that a new drug called Mavenclad/Cladribine is his best chance of stopping progression, and that it has been shown to stop progression in a third of those with PPMS. However, after MRI's theyve decided they wont give it to him. They havent said it wont work for him, but have said there isnt as much chance of it working as it would in others - basically the NHS doesnt want to waste money trying it with my dad when they could give it to someone else with more chance of it working, which I get, but also my dad has worked and payed into the NHS his whole life why shouldnt he be given a chance?! Basically what I want to know is there anywhere over seas, maybe America, Canada, Russia? That you can buy Mavenclad/Cladribine? Ive looked online and there are sites selling it, but Im not sure about buying it online, especially with the price they are charging, I dont mind paying it if I know 100% it is the right thing but I cant afford to risk £1000's buying something online for it to turn up and be a few smarties in a box! If anyone has any information I would massively appreciate it, my dad would too!
@Stumbler

@holtyc , I can understand your concern for your Father. There are not may options for Progressive variants of MS, which is a slight improvement from when there was none! The National Institute for Clinical Excellence (NICE) determine which drugs can be supplied on the NHS, based on effectiveness and value for money. There is a lot of research going on :- https://www.mssociety.org.uk/research/explore-our-research/emerging-research-and-treatments/explore-treatments-in-trials#resultType=list&sort=relevance&page=1&results=20 However, this is all for the future and you are looking for answers now. The following will be of interest to you :- http://multiple-sclerosis-research.blogspot.com/2018/06/cladribine-for-people-with-progressive.html If your Father is London-based as well as yourself, he could ask to be referred to the Bart's team and see if he too can be treated off-label..........

@Highlander

Hi @holtyc From personal experience I was told I PROBABLY had SPMS . probably wouldn't work for me either. So I told him it may PROBABLY work for me, I'm now in the process of getting on Tec. PROBABLY don't cut it with me, you make the Neuro squirm a bit, if that don't work get a second opinion probably someone will see it your way. Wish you luck.