Last reply 4 weeks ago
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!

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stumbler
1 month ago

@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
1 month ago

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.


fxms
1 month ago

Hello @holtyc!

Mavenclad (cladribine 10mg tablets) is a new oral treatment for ‘highly active’ RRMS. (Or RRMS alone, depending on the country). The product is marketed as ‘innovatively simple’, given that it’s a short-course oral treatment with proven efficacy in RRMS.

I suspect that the NHS does not cover treatment with cladribine for off-label indications such as progressive forms of MS. This does not mean It wont work for your father.

Mavenclad is a new product and will be expensive worldwide until generic versions become available. However, the active pharmaceutical ingredient in Mavenclad can be found in an injectable form, which should be much more accessible. (Brand name for injectable cladribine: Leustatin 10mg/10mL – Janssen-Claig: https://www.medicines.org.uk/emc/product/1438/smpc)

PLEASE, consult with your neurologist if this would be a viable option for your father since it is still an off-label indication. I am just trying to help, but I am not qualified nor informed enough to give you proper guidance.

Best of luck! 🙂


sciencegeek
1 month ago

Your profie says you are based in London. You should ask your Dad to be referred to the Royal London (or he can do it himself by contacting the team there). They would be able to discuss whether Cladribine is a good option for him. They do use it off-lable there, so it’s probably his best bet.


seanachai
4 weeks ago

Hi @holtyc

I would suggest exploring HSCT, there are not many if any options for PPMS now, HSCT is one… risks yes… benefits massive and stats hight (lot of factors, how long MS, EDSS et etc.)


mmhhpp
4 weeks ago

@holtyc

Hi, i just wanted to add if you don’t get Cladribine in the end don’t get too crossed about it.

We all tend to be hooked to any possibility of stopping ms but I believe there is nothing there . I haven’t seen anything that a hundred percent will stop any type of ms. My best advice after spending nine years of my life reading all about MS is forget about it and live your life , nothing is going to stop ms. Get the most of life adapt to new changes ms will bring. It may sound a bit depressing but I believe that’s what it is .


mmhhpp
4 weeks ago

Until researchers find the cause of MS they will never have an efficiant treatment for it.


holtyc
4 weeks ago

Hey, Just wanted to say thanks everyone for your advice. @seanachai my dad HSCT about 4 years ago, it helped in some ways but not in the ways we had hoped, for others there with him who he has stayed in contact with it seems to have helped really well!

@mmhhpp That is a good way to look at it, to be honest my dad does really well just getting on with his life, but anything that could help is worth a shot, I saw on your profile that you have been taking Cladribine since May 2018, I know its only a few months but have you noticed any improvements?


seanachai
4 weeks ago

sorry to hear that @holtyc, did it manage to halt or is progression continuing ?

Sadly its not 100%, still doesn’t work for 20-30%.


mmhhpp
4 weeks ago

Early days…. ask me again in December. I wouldn’t say stops ms but early days…

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