Last reply 2 months ago
DMTs and Aging

Professor Giovannoni has just posted an interesting article on the Barts MS Blog which is saying that efficacy of MS drugs is linked to age .
It makes very interesting reading . He is again reiterating that SPMS is just the aging process

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stumbler
2 months ago

@tessa , I couldn’t find this article. Do you have a link or the title of the article? Thanks


tessa
2 months ago

@stumbler

Hi john ..sorry it’s on his twitter feed which I receive and he then usually posts on blog later
#MS#MultipleSclerosis# research.msbrainhealth.org/treatment-deci…
Not sure if that is enough for you to get it
It’s a really interesting bit of research …and seems to be saying that DMTs lose their efficacacy with aging


stumbler
2 months ago

tessa
2 months ago

@stumbler ..that’s the bunny ! Knew your whizz computer skills would find it…interesting isn’t it
Tessa x


stumbler
2 months ago

@tessa , I always knew that at my age I was beyond help! lol 😉


tessa
2 months ago

@stumbler …I just keep drinking the prosecco or champagne if I am given it!
X


Anonymous
2 months ago

@tessa just had a read… I find that very scary unless I’m reading it wrong? DMT stops working over age 53 (so what does that mean stop taking and decline?)

Also looks like alemtuzimab is the worst? Better given if you’re in you’re early 30s? And the new one Ocrelizumab, which I thought was meant to be better than alemtuzimab actually looks a lot worse…

I really hope I’ve read that chart wrong cos if not, then my hope for any positive outcome to this (reading stories of people in their 70s living with me gives me hope) will be well and truly blown out of the water 😢


nutshell88
2 months ago

@tessa

they’ve always told me you better take treatment since you are young to protect you in the future
my type of MS never cause relapses but eith rebrf side effects it did so i stopped all treatments
but if its going to happen i mean disability due to aging then why i bother and tuin my mood when im 30
or is the article saying it would surely protect me from relapses later because i disagree with that becsuse while taking them i actually get relspses

i hope you help get exactly what we must do based on the article


tessa
2 months ago

@macca1975 @nutshell88
I have absolutely no idea what this actually means I have no idea about this condition at all.. I am not a medic …and don’t think anyone knows including high powered neurologists ..one of whom ,Professor Giovannoni ,thought it interesting enough to post on his twitter feed
I can’t understand the ocrelizumab result as it has only just been approved so those statistics can’t be based on much evidence..
What I have gathered and what is constantly said is hit RRMS hard and early in order to prevent SPMS but this appears to be saying SPMS will happen as you age anyway despite DMTs which was a new concept to me .
It looks as though the jury is out on that which is understandable because much more time has to elapse before any definitive assessment could be made .
The reason therefore to take DMTs seems blurred but if they prevent relapses then that is surely good whatever happens after you are in your fifties . However if you continue to have relapses on them that is another question isn’t it.
As I have said countless times I am now 69 I have supposedly had ms since I was 16 in 1965 ..I have not had any of the DMTs ..I have lived a relapse free life after I completely recovered from a severe episode . I forgot about the whole thing .Now after 45 years I have SPMS apparently
So it’s all totally different for different people .
DMTs are ..not like having a polio jab and knowing you won’t get polio. People have completely different reactions to them…and some people like me can be absolutely ok for years and years without them . And when I had my first MRI four years ago there was little evidence of any damage .,so none of the silent under the radar deterioration that has also been posited .
Quite frankly no one knows and I certainly don’t…but it is sensible to keep informed.


Anonymous
2 months ago

Thanks @tessa you are probably one of the positive stories I have read.. 69 doing well. I’m 43 just diagnosed and trying to figure it out. It’s occupying all my thoughts, to the point I’ll probably crack up long before any decline 🙄

I’m actually tired of reading and researching.. it feels like we know about as much as the professionals do, they just use the “big words” 😜

Thanks for sharing, it’ll be something else I’ll be asking my Neuro about


nutshell88
2 months ago

@tessa first 5 years my parents never told me I have something called MS I was 17 2005
never got any relapse untill i took dmt 2010
then i stopped it 2011 untill today
my brain is welled damaged but no relapses
I believe this MS is like a fingerprint different for each person as if it has a map or time bomb depents on each person.

And Thanks for your reply x


embroideress
2 months ago

@tessa thanks for the article. Statistics are interesting, but this disease seems to be so very different for each person. My neurologist told me that as we age, we don’t have as much inflammation, and so since the DMTs only work on reducing the inflammation that causes relapses, we no longer benefit from them as we age (moving to spms, I suppose). I’ve just started a DMT at 57, after my first sensory relapse (aside from optic neuritis 40 years ago, I’ve been relapse free, much like you). I hope it works, but perhaps I just won’t have inflammation leading to a relapse because of my age and not because of the treatment. Of course the doctors can never even posit an answer to the question ‘So what does my future look like, doc?” 😉


tessa
2 months ago

@embroideress…hi I got a message from you about friendship request which I couldn’t access ..not quite sure what went wrong ! I could always try to do a request to you …let’s try that
I see you live in France…probably my favourite place!
I totally agree that this is such a different disease for everyone that none of the norms really apply .
I have a friend on this site who certainly started DMTs at around your age..I think she changed the medication once but has continued with the second choice and is doing very well ..so everything is atypical .
That I guess is what makes it so hard for researchers .
However progress seems to be made with other neurological conditions .
Tessa x


potter
2 months ago

I am 65 and still walking and working in my studio. One of my aunts who lived to be 75 never had any treatment for her MS. She had foot drop and used a cane, she died of cancer not MS. Potter


californiadreamin
2 months ago

By the way this article came out in February. When it first came out it was very concerning since my wife is in her 40s. If you follow the entire article you will see it’s not what it seems. The statistics are fine but the issue is these trials didn’t release the ages of people and the results just the averages. It greatly limits the results. Here are two key points to factor in:

1) the trials to the right are mostly ppms trials while the ones to left are rrms. That accounts for most of the difference

2) if you look at o1 and o2 those are the opera trials. What’s shown on the graph is a single circle for the trial. Roche didn’t release the specifics but they said in those trials they saw similar effects across all ages. If they plotted o1 and o2 by age they chart would looked that way. All it means is the mean age of that trial was lower.

The good thing is this paper published all the data it used and the code to generate it. I plotted only rrms and the results are very different. So don’t read much into this is my opinion. Doctors should be much more careful on publications like this. I went through each of the circles to the original trials and if you do the same the picture is very different then what the statistics show.


edgarleroy
2 months ago

They still see OCBs & neurofilaments in progressive MS patients, so good anti-inflammatory drug treatment may still help preserve function in older people. Treat early and effectively to prevent damage down the road. Wish I could have done that back in the 1980s.

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