You will have noticed that a lot of discussion on this blog has recently been devoted to the topic of secondary progression or smouldering MS or whatever else you want to call it. At the moment there is no standard terminology for describing the scenario of someone with MS who is NEDA-2 (no relapses and no activity on MRI) who is getting worse. The getting worse could be overt, i.e. worsening...
“I love deadlines. I like the whooshing sound they make as they fly by” Douglas Adams, Hitchhikers Guide to the Galaxy. There is one deadline that happened quitely earlier this month. NHS England turned on the blueteq form ocrelizumab treatment for PPMSers living in England; they did at the last possible timepoint dictated by the law. The good news is that the requirements for someone...
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...
I saw three patients 9-and-half-years after starting treatment with alemtuzumab as first-line therapy, yesterday. It was a remarkable experience. Only one of the three patients had needed a third cycle of alemtuzumab. All are in long-term remission; i.e. flat-lining on the EDSS, relapse-free and with no MRI activity (NEDA-3). Their EDSS scores yesterday were 1.0, 1.5 and 2.0. All of them are...
Medical retirement hit me instantaneously; suddenly I knew the time had arrived. My old friend multiple sclerosis had boxed me into a corner. I had spent the last 15 years working as an international contract analyst programmer travelling all over the world. I had SPMS but retirement at 58 was not on my horizon. I had discovered methods to cope with the problem of MS but my OOMPH was definitely...
I’m an artist, a painter, and a person with MS. I’m looking for volunteers to take part in and contribute to a new artwork inspired by the #ThinkHand campaign. My intention is to carry out several unorthodox and experimental portraits of people who are affected by the disease in various ways and stages. I would like to invite everyone who has MS or a carer or otherwise affected by the...
Finally, after a week or more of thinking and contemplation my opinion about the ofatumumab vs. teriflunomide trial data (ASCLEPIOS I and II); another of my ECTRIMS highlights. The result of the ASCLEPIOS I and II are not unexpected and in line with the treatment effects of anti-CD20 therapies with some caveats. Novartis summary: Both ASCLEPIOS I and II studies met their primary endpoints in...
The following is the programme for the 3rd MS@TheLimits meeting in London next year. The feedback for the last two meetings (2017 & 2018) has been surprisingly good, which augurs well for our 2020 meeting. The following is the headline feedback from 2017 & 2018: 201798% of delegates found the meeting to be useful or extremely useful.100% of delegates found the organisation to be good or...
Earlier this year I asked the question “why should someone with MS who lives in place B get a different service to someone who lives in place A?” and argued that variance, when it comes to the provision of healthcare services, is a euphemism for inequality, representing the ‘haves’ and ‘have-nots’ in society. This was a prelude to our ‘Raising the Bar’ meeting in Birmingham. We have set an...
JCV STRATIFY (anti-JCV antibody) test has been utilized for more than decade to de-risk natalizumab treatment and other DMTs for risk of PML (Progressive Multifocal Leukoencephalopathy). Cases of PML have occurred predominantly in natalizumab, but less commonly with fingolimod (Gilenya), dimethylfumerate (Tecfidera) and rituximab. A high JCV antibody index value indicates that the risk of...