Mavenclad

[lbenmaor]

Is anyone ordering this from Europe to help their MS?

Leslie

[kymrob91457]

Hi Ibenmaor. I've reads about Mavenclad, and am very interested in it, but how do you get it? If you know, please tell me. I'm SPMS, but am starting on Ocrevus in the next few weeks.

[lbenmaor in reply to kymrob91457]

Hi kymrob91457.

I read about it on line. It seems people are ordering it on line and

having it delivered to their home. Please let me know what you

decide to do.

Leslie

[tnolan2006]

Off-label injectable is available in US. Oral prob within 1 year. Good drug, I took it over past couple of years. Relatively safe, effective, easy to tolerate & convenient.

[lbenmaor in reply to tnolan2006]

tnolan2006,

How has it helped you and what does off-label injectable mean?

Thanks a bunch.

Leslie

[tnolan2006 in reply to lbenmaor]

Cladribine was originally developed as a drug for a type of blood cancer. It selectively depletes lymphocytes in the brain and lymph system as well as blood.

(see here: link.springer.com/epdf/10.1... ).

I used their protocol. Here's why they like it:

multiple-sclerosis-research...

[Jesmcd2 CommunityAmbassador]

Guys, as with ANY MEDICATION, PLEASE CHECK WITH YOUR HEALTH CARE TEAM 1ST!

Just because You think it sounds good, DOES NOT mean your Neuro will!

🤗💕

J☄

[lbenmaor in reply to Jesmcd2]

Thanks for the advice.

Leslie

[Frances_B in reply to Jesmcd2]

Well said Jesmcd2 - and very sound advice.

Unfortunately the realities of life mean that a drug approved for use in one country may not be approved in another - and I have no idea whether Mavenclad (Cladribine) is approved for use in the USA with MS, even if it is approved for used in other conditions.

To answer the question which was asked but not answered - "off-label" use means that a drug is prescribed/used by doctors to treat a condition for which it has not been formally approved by drug regulation and approval agencies. However, most doctors are reluctant to prescribe "off-label" because they are worried about being sued to the hills and back if there is an adverse event which occurs when/while the drug is being used.

I know that there has been quite a battle to get Cladribine approved in the UK - partly because there were a couple of anomalous statistics relating to cancer incidence in clinical trials, but it used to be approved for use with MS in Russia and Australia (under the name of Movectro). However, the manufacturer withdrew it from the market - it seems that they were facing another clinical trial requirement plus other hurdles to get it approved for "on-label" use with MS in other countries, and the markets in Russia and Aus were not big or profitable enough to justify continuing to market the drug at that time. (Don't worry folks - capitalism and profit motives will always affect what you can access, when, and how - drug companies certainly are not in the game just to make people better - no matter what their company mission statements might proclaim........)

multiple-sclerosis-research...

[lbenmaor in reply to Frances_B]

Frances B,

Thanks so much for the info. Now I know what off label means.

It's so nice to have this site to learn from others.

Leslie