Another study that you may be interested in is the RIVITaLISe study. This study is also targeting the B cell within the central nervous system (CNS) in the hope of disrupting the ectopic B cell follicles and thereby trying to stop progressive cortical or grey matter disease progression. Rituximab is a monoclonal antibody that targets a surface protein on B cells called CD20. There is good phase 2 data on its effectiveness when given intravenously (i.e. via a peripheral vein) in RRMS and a subgroup of PPMS (click here for previous post). This study is testing whether giving it into the spinal fluid via a lumbar puncture will help in subjects with SPMS.
Click here for more details on the trial: “Double Blind Combination of Rituximab by Intravenous and Intrathecal Injection Versus Placebo in Patients With Low-Inflammatory Secondary Progressive Multiple Sclerosis (RIVITaLISe)”
“Another example of a trial targeting patients with progressive MS. There is clearly activity in the field, but maybe not enough to satisfy the unmet need for PwSPMS and PPMS?”
CoI: multiple (click here for details); Roche/Genentech & Biogen-Idec are the companies that are responsible for developing and marketing Rituximab. Please note Rituximab is not licensed to be used in MS.
Yes, I hear a lot about activity in the field of potential treatments for progressive multiple sclerosis but remain rather sceptical of such reports because it does seem like looking for a needle in a haystack. Somebody in the comments section of this blog mentioned anti-lingo-1 which I then Goggled and have to say it sounds far too good to be true. I would like to hear more from the professionals about they think of the potential for anti-lingo-1 because I would love for my cynicism to be proven wrong on this occasion.I was watching THE WRIGHT STUFF on Channel 5 this morning and they were discussing the right to die. Surprise-surprise, Debbie Purdy called the show and did what she does best which is endorse the right for people with chronic illnesses to chose the moment of their death. While I can imagine some cases of multiple sclerosis can be a fate worse than death, I begrudge the amount of media attention given to the haplessness of this disease. Multiple sclerosis is not a terminal illness, even in its progressive form.Managing expectations on a conceptual level is fine but I want British neurological scientists and consultants to start being more confident about their research and abilities to successfully treat progressive multiple sclerosis in the very near future so that the media can promote the illness with less despondency and with greater hopefulness. I am extremely jaded at the best of times, but I want to see positivity from the medical community who are in a position to treat debilitating neurological conditions. Next time Prof G, can you please call the show and present a counter argument to Debbie Purdy’s nihilistic rhetoric, or are you as unenthusiastic as what she is (and to some degree what I am) when it comes to the future of treating progressive forms of multiple sclerosis?
To the ghost of MS past: I agree MS is not a terminal illness. I have made this point in a previous comment on this blog. We are trying to canvas opinion from the MS community about this issue and how to handle it so if you have not completed our end-of-life survey, please do. We will let you know the results. Re SPMS; I am upbeat about a treatment to slow the progression, but less confident about promising a treatment to stop and/or reverse the disability. Re anti-lingo; I will do a detailed posting on this topic in the next few days.
I don't share your view about MS not being terminal:- Jacqueline du Pre died in her early 40s- J K Rowling's mother died at 45- There's a charity in Australia called the Trish Foundation – Trish died at 32 from MSEDSS 10 is 'death from MS' – sounds pretty terminal to me.Suicide among young men with MS is particularly high.Debbie Purdy's situation is as near to death as I could be imagined (as it is for anyone at 9 on the EDSS scale).Dignitas does a roaring trade with MS sufferers.Youngish people with MS in old peoples' homes is a fate worse than death.You said on this blog that on average MS sufferers have a lifespan which is 10 years less than for an average person. So for every MS sufferer that gets to 80 there will be another dying at 60!If only it did kill you more quickly, then they'd throw more money at it and make some progress. Instead this is allowed to eat you away slowly and you are forced to watch yourself deteriorate! As someone at 30 with this disease I'll never be well again / healthy again for the rest of my life. Potentially I've got 30+ years to watch this disease eat me away. Mustn't grumble!
Prof G,I asked the question about Grey Matter damage and am most grateful for all the information you have provided. You say that "Re SPMS; I am upbeat about a treatment to slow the progression".Any sense of when (very roughly) we might see treaments available? I know that the CUPID study reports later this year. You also mention Rituximab because of its B cell depleting approach. I recall another B cell depleting drug which is in trials (?Orec…). Will this be tried in SPMS? Could we see a cocktail of drugs for those with progressive MS e.g. B cell depleting agent, cannaboid tablet, anti-lingo to promote re-myelination?
I asked the ultimate question at my wife's last neuro appt (wife was wheeled out of the room by a relative) and was told that someone with my Wife's PPMS was, on average, going to die 17 years after diagnosis. As he said though, it's not the MS that gets you, it's the chest infection, bladder infection etc etc tat can't be fought off. It's disingenuous to describe MS as not terminal or are we saying he made up his own stats?! I guess it's like saying that being blind is not terminal when you live in the middle of the M1…one day a car's gonna get you. Matthew Appleby…7 years of wedlock left (on average!)