Saving Upper Limb Function-Should we Go for it? Can we afford not to try?

Previously posted as "It may not be all doom and gloom" following our decision to stop trying to get funding for a trial in RRMS...


Currently, Big Pharma is mainly interested in Relapsing MS. Academia, at least in the UK, are focussing their effort on ambulatory people with MS.

Can we do something for the forgotten thousands, those with deteriorating MS who are wheel chair users most or all of the time?

We know that 
Current DMT are too expensive and are not considered cost-effective for pwDMS and so DMT are withdrawn, or not even started.
    "Save the Hands"
Picture drawn by MD over 30 years ago (found yesterday when having a clear out) based on original by Patrick Woodroofe

pwDMS who are in wheel chairs 

(i)  have virtually no access to DMT and 
(ii) are excluded from clinical trials of drugs against deteriorating ("progressive") MS.

They are the forgotten thousands.  People in wheel chairs have active lesions and progress and loose upper limb function.
The data from the ASCEND trial provide evidence that upper limb deterioration can be halted in pwDMS, whilst lower limb function continued to deteriorate. Other studies may not have shown this because DMT are not good enough to stop active disease at this disease stage.
Cladridine inhibits Active Lesion Formation: 
Gadolinium enhancing lesions drop by over 90%. 
Fewer lesions means less damage and reduced risk of deterioration

Cladribine inhibits Relapses (annual relapse rate decreased to about 0.1 = one every ten years). Fewer relapses means less damage and reduced risk of deterioration.

Cladribine induces NEDA-3 in nearly 50% of people with a 1 year course of treatment.

Cladribine will be of value to slow the accumulation of damage in anyone with active MS... This means it should be of value for everyone with MS.

A cost-effective drug means everyone with active MS could have access to treatment.

                                      Missed the video?





Cladribine may have the potential to save upper limb function via inhibition of peripheral immunity as it probably is as active as Natalizumab.

Cladribine enters the central nervous system and can kill dividing and non-dividing white blood cells, and it can kill plasma cells and could potentially get rid of oligoclonal antibody bands. If these are causing grey matter lesions or even deterioration, it will target these mechanisms unlike any other MS drugs, including Ocrelizumab.

Cladribine is an induction treatment, thus it can act as a platform for layering on neuroprotection and repair agents. 

Are you interested in a study for pwDMS, who are wheel chair users? 

If so, what should we call the trial?

This will again mean writing grants to support the study and it will not be quick, but we are willing to give it a go.

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