NeuroTalk Support Groups - Reduction in mortality b/c of DMD?

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Reduction in mortality b/c of DMD?

That's my takeaway . Yours ?

Bolding mine

*edited in Link to article* http://www.neurology.org/content/81/2/184.short
PubMed http://www.ncbi.nlm.nih.gov/pubmed/23836941

Quote:

Mortality in patients with multiple sclerosis

Antonio Scalfari, MD,
Volker Knappertz, MD,
Gary Cutter, PhD,
Douglas S. Goodin, MD,
Raymond Ashton, PGCE and
George C. Ebers, MD

• From the Centre of Neuroscience (A.S.), Division of Experimental
Medicine, Department of Medicine, Imperial College, Hammersmith Hospital, London, UK; Department of Neurology (V.K.), Heinrich Heine University Düsseldorf, Düsseldorf, Germany; AstraZeneca–Medimmune (V.K.), Gaithersburg, MD; Section on Research Methods and Clinical Trials (G.C.), University of Alabama at Birmingham, Birmingham; Department of Neurology (D.S.G.), University of California, San Francisco; PAREXEL MMS (R.A.), West Sussex; and Nuffield Department of Clinical Neurosciences (G.E.), John Radcliffe Hospital, University of Oxford, Oxford, UK.
• Correspondence to Dr. Ebers: george.ebers@ndcn.ox.ac.uk
• doi: 10.1212/WNL.0b013e31829a3388 Neurology July 9, 2013 vol. 81 no. 2 184-192

Abstract

Mortality in patients with multiple sclerosis (MS) 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. Patients 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 patients and the incidence of deaths not due to MS varies among countries. Particularly, suicide is substantially increased in patients with MS, 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 patients. 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.

GLOSSARY

EDR=
excess death rate;
IFN=
interferon;
MHC=
major histocompatibility complex;
MS=
multiple sclerosis;
PP=
primary progressive;
RCT=
randomized clinical trial;
SMR=
standardized mortality ratio

No offense, missj, and thank you for the info, but that's kind of a DUH:Doh:! thing. Of course if you have a milder course of MS, whether through meds or normal disease course, the chances of dying as a direct result of MS are less.

YAY, another expensive needless study.:D:D!!

Sorry MissJ, couldn't resist.:)

They should conduct a study of how many needless studies are done! :rolleyes:

takes more than a 'duh' on an online forum from a cyber-stranger to offend me.......
Helping people to get access to information to hopefully help them make good decisions about their health and self care is another facet of 'support'.

Well since I produce science jargon for a living I'm pretty good at reading it, and I have a couple problems with this abstract (although in all fairness I'm totally not taking the time to read the whole article at the moment! :p).

This is what I am taking away from this...
1) Yes, of course people who die with MS blame the MS for what is happening rather than other random things. We as humans like to connect bits of information together, so if we can draw even a remotely logical connection between what is going on and something we know about, like MS, then it will take the blame whether it deserves it or not.

2) People who are on drugs for longer periods of time tend to die more. This could be due to the fact that they are either a) older, b) have more pronounced symptoms, c) have had MS for longer periods of time and therefore are taking the drugs longer than people who have had it for shorter periods of time. This is one of those self-fulfilling prophecies IMO because you can see these same connections with statements like "People who have been drinking coffee for more years of their lives have higher rates of cancer!" when it could be due to a whole host of other things rather than just believing that coffee causes cancer.

3) Correlation does not equal causation. Ok, we know that people who were on interferons tended to have reduced mortality, but that doesn't mean that you can just willy nilly connect the dots and then assume that it 100% causes death. Science is sadly not that pretty.

All that being said, I do appreciate you posting, because I am an information collector myself :D I find it comforting to have as much information as possible so I can tell myself (correctly? who knows!) that I am making the best decision I can based on my knowledge.

thanks for your response.
Correlation/Causation- With you there! I learned that early on in the course of the disease that the 2 C's are VERY different and the tendency is great to confuse the two.

So maybe I am reading it wrong. What I got from it is that taking a dmd is a good thing because it a milder disease course is better than a more severe one.
Is that your understating?

In any case thank you for your response. I appreciate engaging with like minded Ms'ers about stuff like this.

Its a whole new level of support beyond the "sorry you are going thru this now, hope it eases soon.'

bowdowntobri

just saw this.. reading it now
http://www.nytimes.com/2013/07/14/op...k.html?hp&_r=0

good article and the comments are interesting too.

So I've been working on clinical drug trials for the past two years and I find that article right on point. I'm part of a group that has been looking at treating kids with ADHD and conduct problems, so no where near cancer, but we still had a double blind, placebo controlled study that went into all the minutia the article you posted mentioned. Love looking into things like that.

I think your point missj about how dmds are good because they it should (in theory) cause a more mild disease course is dead on. That's why we are almost all on them anyway, right? We really have no way of knowing whether they are working, since it isn't possible to attribute lack of symptoms/no addition lesions/etc back the meds since just because they are correlated doesn't mean that they caused anything to happen ;):tongue: But we think that they do, and even though the side effects and needles can be a pain, better safe than sorry.

And I agree with you in terms of support - very rarely do I need or want people to feel sorry for me, but it helps me more to feel educated about what I am going through and appreciate people who help me further that!

I don't know about the accuracy of studies, but I would like to say, from just what I have witnessed in my family, and also what I am experiencing, that there is some credibility to people being diagnosed when they are older, dying due to MS.

My second cousin, was diagnosed, at age the age of 48, and died due to his MS at the age of 66. There weren't any DMD's when he was diagnosed, and by the time there were DMD's, his MS had progressed so much, that they didn't do him any good.

My uncle was diagnosed in his late 50's, and died due to his MS.

I was diagnosed at the age of almost 58-2 & 1/2 years ago, I am on my 2nd DMD, and my MS is progressing. DMD's are not guaranteed to slow progression.

Chelle

I am so sorry for your losses, Chelle. It does not mean that
you will follow suit, however. It is not written in the small
print of the MS contract.:D

Quote:

Originally Posted by SallyC (Post 1001258)

I am so sorry for your losses, Chelle. It does not mean that
you will follow suit, however. It is not written in the small
print of the MS contract.:D

Thank you, Sally. I miss my cousin Irv and my Uncle Chuck so much! But, watching them suffer was unbearable.

I'm not worried. :) I have a very deep faith in God.

Chelle

What I had difficulty with, in the original abstract, was the language, that there just wasn't enough information to make direct correlations. Social circumstances weren't able to be compiled, and though it mentioned a higher rate of suicide, there were no statistical numbers to back up the statement.

One of the things, I usually grapple with, upon reading that someone famous has passed away(or even not so famous), is that MS-related. Not necessarily the disease itself that was the cause of death.

Did one catch pneumonia and pass on, due to having a weakened auto-immune system, or was it just from being elderly?

Was it not from being on DMD's? Because there is the DMD correlation made, in the article, I question, where the study was funded? What was the paper trail? Is it a corporate push, to get more people onto DMDs? That's the business major in me, questioning that side of literature.

Otherwise, the NYTimes article was interesting.

I do appreciate sharing. And conversations like these, are usually welcome in my book! Knowledge is Power, in my book!