TagSecondary progressive

No patient with secondary progressive MS should be left behind

It was a privilege to be asked to write the foreword to a new policy document, “The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis” dealing with more advanced MS. If you get a chance please read the document. The ‘forgotten many’ is how people with secondary progressive or advanced multiple sclerosis (SPMS) describe themselves. SPMS has a significant impact...

Premature Ageing

One of my colleagues, with whom I was co-authoring an editorial on smouldering MS, demanded I delete the section on premature ageing being a factor driving delayed worsening of disability in people with MS (pwMS). I refused so we had to pull the editorial. The fact that he is quite old and doesn’t like the hypothesis of brain & cognitive reserve being neuroprotective explains his position. He...

What is advanced MS?

Barts-MS rose-tinted-odometer – zero stars Someone recently asked what is advanced MS? I suspect they have been getting frustrated with our use of this adjective without a clearer understanding of what it really means. To find out if you have advanced MS you need to put yourself through a battery of stress tests to find-out much reserve you have left to deal with MS and life in the future...

Is siponimod the first cul-de-sac DMT?

Barts-MS rose-tinted-odometer  ★ A big worry for neurologists and pwMS is the sequencing of DMTs. What DMTs can be used before and after each other and does the sequencing of DMTs change the risk profile of the individual DMTs concerned? These have been dealt with many times on this blog and I am in the final stages of completing phase 1 of my app that will address the specific issues around each...

Slip-sliding away – do I have secondary progressive MS?

Barts-MS rose-tinted-odometer – zero stars We have been running a campaign that #MS_is_1_not_2_or_3_diseases for sometime. This is based on the biology of MS and not what we see clinically. The pathology that underpins so-called progressive MS is the loss of axons, loss of neurons and loss of synapses, which are the chemical connections between neurons. All three of these processes begin...

Killjoys peddle fake news

For all the killjoys out there DMTs do work, i..e. they modify the course of MS and prevent you from reaching all disability milestones including the time to diagnosis of SPMS and EDSS 10.0 or death. Please don’t listen to the zealots who are trying to spin fake news that the only treatment to prevent the development of progressive MS is HSCT; they are wrong. There are other options; the study...

Hopebird

The debate about what is active and inactive secondary progressive MS will not be settled by the EMA adopting a positive opinion, recommending the granting of a marketing authorisation for siponimod, which is now ‘licensed’ for the treatment of adult patients with secondary progressive multiple sclerosis (SPMS) with active disease. Siponimod reduces disability progression in people with active...

Self-diagnosis

Dear Neuro, You see me once a year for 15 minutes, you look at my MRI report and blood results, you ask me a lot of questions, you examine me and then you tell me that everything is fine. At my last visit, you said my MS was stable, you mentioned to me that I was NEDA, because I had had no relapses, no new lesions on my MRI and my EDSS was static at 3.0.  I have now looked up and read about...

Why is everyone drinking anti-CD20 kool-aid?

Prof G will ocrelizumab and rituximab prevent SPMS? Just back from the COMBAT-MS stakeholders meeting in Pasadena with the Kaiser (Kaiser Foundation Research Institute) and Swedish (Karolinska Institute) trial teams, PCORI (Patient-Centered Outcomes Research Institute) and many brave an wonderful people with MS and their families. The COMBAT-MS study (NCT03193866) is recruiting well and is on...

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