Scalfari A, Knappertz V, Cutter G, Goodin DS, Ashton R, Ebers GC. Mortality in patients with multiple sclerosis. Neurology. 2013; 81:184-192.
Mortality in MSers is significantly increased compared with the general population. Many questions concerning survival in MS are still unanswered due to the difficulty of comparing information collected at different times and in different geographic areas.
The increasing incidence of MS, the improvement in care of the chronically disabled, and different methodologies may explain the lack of coherence among studies’ results. Reported times to death from birth and from disease onset/diagnosis are highly variable.
MSers older at onset or with primary progressive course have shorter survival; however, data on sex and mortality are contradictory. Changes in sex ratio in MS over time represent one possible explanation.
MS is the main cause of death in ≥50% of MSers and the incidence of deaths not due to MS varies among countries. Particularly, suicide is substantially increased in MSers, and, despite its varying incidence, mainly due to “cultural bias,” it should be considered an MS-related cause of death.
Recent results of the long-term follow-up study of interferon-β-1b demonstrated a significant reduction of mortality among treated MSers.
Notwithstanding its long latency, mortality is therefore an unambiguously valid long-term outcome in randomized controlled trials.
It usefully combines the net impact of treatment efficacy on longevity and adverse events, which may reduce it.
“I didn’t think I would live to see the day when Professor George Ebers would admit that DMTs in MS are effective and reduce mortality. What he is referring to is the very clear data that starting interferon-beta three years early reduces the chances of dying at 21 years by 47%.”
“Death is equivalent to EDSS 10 if interferon-beta reduces your chances of reaching EDSS 10 it also reduces your chances of getting to EDSS 6 (stick), EDSS 7 (wheelchair) and EDSS 8 & 9 (bed).”
“If interferon-beta, which is only a moderately effective DMT can do this imagine what a highly effective DMT could achieve?”
“Another message that is loud and clear from this data is to start treatment early without a delay; if 3 years can make such a difference why wait?”
I assume many of us are beyond the benefits of these emerging DMTs, either because we missed the 3-year portal of opportunity or are already progressive.It will be so much better to hear about remyelination therapies that slow down existing progression or even stop it in its tracks. Why has news on such drugs gone so very silent?
We have posted quite a lot on remyelination in recent weeks: I am only aware of one trial testing remyelination in MSers at present. http://clinicaltrials.gov/ct2/show/NCT01721161?term=BIIB033&rank=4and another two to start:http://clinicaltrials.gov/ct2/show/NCT01864148?term=BIIB033&rank=2and one in Cambridge targeting the RXR pathway. What you need to realise is that if you suppress inflammation spontaneous remyelination occurs anyway. There is no problem with remyelination in MS, the problem is demyelination. You need to stop demyelination and the loss of axons as a consequence of demyelination. If you don't stop the axonal loss there is nothing to remyelinate.
What would you advocate in the way of early treatment to someone who has been given a dx of ppms today ?Regards as always.
There is nothing licenced and whilst there are a few things i would dig oit of the drug cabinet,without the class i evidence that we request of others they are just thoughts…..that we have to keep to ourselves overwise we could start a fad.
There is nothing licenced and whilst there are a few things i would dig oit of the drug cabinet,without the class i evidence that we request of others they are just thoughts…..that we have to keep to ourselves overwise we could start a fad.
There is nothing licenced and whilst there are a few things i would dig oit of the drug cabinet,without the class i evidence that we request of others they are just thoughts…..that we have to keep to ourselves overwise we could start a fad.
There is nothing licenced and whilst there are a few things i would dig oit of the drug cabinet,without the class i evidence that we request of others they are just thoughts…..that we have to keep to ourselves overwise we could start a fad.
Re 'start a fad' : is that good enough reason not to share these ideas?Wouldn't you dig them out if needed for yourself or close family/friends? (May it never be needed of course. )
Re: "What would you advocate in the way of early treatment to someone who has been given a dx of ppms today?"If they are young (<50) and have active lesions on MRI (Gd-enhancing) we would put in an IFR (individual funding request) to treat them with rituximab (anti-CD20); we have been successful with 5 applications like this in the past. Otherwise we would recommend they go into a clinical trial. If none of the above we monitor them. You are aware that there are no licensed DMTs for PPMS.
Were these treatments successful?
'start a fad' : is that good enough reason not to share these ideas?I'm afraid so….otherwise we are as bad as the scammers
You'd be scammer if you'd ask a lot of money for advice. As there is nothing for ppms, good advice based on research is better than nothing.
Many of us are beyond the benefits…I would not say that.If you look at a MSers brain many many years after diagnosis there is still immune activity ongoing.
Can we have some more on this topic of what happens if you miss the 3-year window?
In this case it is 3 years because the placebo group started three years later in a 3 year trial