Thursday, 29 June 2017

#ThinkHand: people with PPMS need your help?

We need your help to raise awareness about hand function in MS #ThinkHand

In the last few days I have become increasingly anxious about the regulators, payers and healthcare professional letting down pwPPMS. Despite having the first positive trial of a DMT in PPMS there are many hurdles to overcome to get ocrelizumab to the people who need it, i.e. people with active PPMS.

It seems as if the wider community are fixated with the impact of ocrelizumab on lower limb function, i.e. compared to placebo it reduced EDSS progression and worsening of the Timed-25-Foot by ~25%. However, the elephant in the room is its impact on hand and arm function. In the ORATORIO study ocrelizumab reduced worsening of the 9-hole peg test by 45%, almost double the impact on lower limb function. These findings are entirely compatible with our length-dependent axonopathy hypothesis. In other words systems with shorter axons and more reserve will respond better to anti-inflammatory DMTs and in a shorter period of time. The upper limb findings of ocrelizumab are so important that I have asked Roche to seriously consider doing a trial in more advanced MS, including people in wheelchairs, to see if ocrelizumab can address this massive unmet need. Other surveys done as part of our #ThinkHand campaign have highlighted the importance of hand function for pwMS. When people lose the ability to walk their arms and hands become their legs and upper limb function keeps them independent. 


The consequences for pwPPMS being denied access to the first licensed therapy cannot be underestimated. So if you care about this issue, and if you care about protecting upper limb function in pwPPMS, can you please complete the survey below. Thank you.



CoI: multiple

15 comments:

  1. Thank you for taking this on; it is very important that I am able to be treated with ocrelizumab.

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  2. How will you make the EMA aware of the findings of this survey?

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  3. What's the point in Ocrelizumab being approved for PPMS? You can already give all your PPMS patients off-label IV Cladribine, can't you? It's likely as effective and the cost is paltry.

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    1. The evidence for Ocrelizumab is simply more robust. We need another trial of Cladribine in progressive MS.

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    2. I am not aware of any trials of cladribine in PPMS.

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    3. Sipe JC, et al. Cladribine in treatment of chronic progressive multiple sclerosis. Lancet 1994;344:9-13.

      Beutler E, et al. The treatment of chronic progressive multiple sclerosis with cladribine. Proc Nat Acad Sci USA 1996;93:1716-20.

      Rice GPA, et al. Cladribine and progressive MS : Clinical and MRI outcomes of a multicenter controlled trial. Neurology 2000;54;1145-55.

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  4. This drug has caused deaths sadly many unaware of the damage this drug does to the body .

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    1. This message is no doubt from leicester, look in spam to see where they usually end up and this one,s natural home.

      P.S. We are well aware that the development of ocrelizumab in Lupus and Arthritis was halted because of some deaths due to ocrelizumab-associated infections. As ocrelizumab becomes more widely used I suspect this could happen and then the induction therapy potential may be examined.

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    2. Spam filter/moderation still needs a bit of fine tuning ;-)

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  5. Hello,

    #thimkhand does not just apply to people with PPMS. OK Ocrelizumab was tested against PPMS. Now here conmes the big but. I have SPMS and although I do not need a wheelchair I have severe foot drop and cannot walk unaided. Now I can stand up for only a couple of minutes unsupported but I can walk with a rollator for several hundred metres. I can hardly write, the 9HPT is a night mare. Doing up buttons on my shirt is a non starter unless I can watch myself putting the buttons through the button holew, so the sahirt is put on like a jumper. As for eatiing peas on a fork don't make mew laugh.

    Please please please think of people like me when putting together tests where hand function is an endpoint. MS-SMART, an ongoing clinical trial for people with SPMS might help neuro protection for the brain but my digital skills are failing me.

    In fact is there anything available to help people with MS that has morphed into progressive MS, call it SPMS? I am on the slippery slope that is getting steeper and more slippery but I do not have any relapses.

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    1. Anything that works for PPMS will work for SPMS, in fact in most trials SPMS is easier to treat than PPMS.

      Ocrelizumab would help you. So would, in my opinion, Alemtuzumab. A low-toxicity non-myelo HSCT regimen would be the best bet. Then you need to add on neuroprotection. Unfortunately the neuroprotection for MS pipeline is only just getting started, but we have preliminary evidence for a lot of compounds. Statins, high dose biotin, testosterone, eostradiol, sodium channel blockers like oxcarbazepine are some examples of compounds with stronger evidence behind them. Compounds with less evidence behind them but potentially (in my opinion) more benefits include IRL-1620, miconazole, NDC-1308, IGF-1, and HGH.

      Hang in there mate. The amount of expletives I could level at progressive MS is unlimited.

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    2. Started in 1972, diagnosed in 1994, morphed to SPMS in 2000 and medically retired in 2012

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  6. What is the dose for high dose Biotin ?

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