Does MS "Burn Out for groups of aging patients?

[jreagan70]

The article said relapse or new brain lesions, so maybe a person could have one without the other.

A relapse can come from the re-activation of old lesions, so new lesions aren't necessary for a relapse.

So yes, it's possible for a person to have one without the other. But the occurrence of either one is an absolute indication to NOT stop a DMT.

So the wording of "without relapses or new brain lesions in the last five years" to define a candidate for stopping a DMT means that the person has neither relapses (n)or new brain lesions to fit that category. In other words, "without" means the absence of both.

[KoKo]

A relapse can come from the re-activation of old lesions, so new lesions aren't necessary for a relapse.

So yes, it's possible for a person to have one without the other. But the occurrence of either one is an absolute indication to NOT stop a DMT.

So the wording of "without relapses or new brain lesions in the last five years" to define a candidate for stopping a DMT means that the person has neither relapses (n)or new brain lesions to fit that category. In other words, "without" means the absence of both.

Thank you for the clarification.

Take Care

[Carolinemf]

Tawanda- clint eastwood would be proud of the hijacking job you did on this thread!
Love and empathise with everyones comments including the 'slap upside of the head'.
Oh the urge gets so strong sometimes......!!! Doctors are by nature generally a bit superior but just because we'r a bit wobbly on our pins or struggling to find the right word to describe some thing it doesn't mean we are stupid and know nothing about a disease we deal with on a daily basis...... slap
We do have to be considerate though and remember that most docs are quite intelligent . Unfortunately, in nature, if one area of ability is more developed, then other skills can be less developed.. hence the inability to see things from an others perspective.


I do seriously have concerns about the statements about stopping dmts just because of age though.
Firstly i know other ms / tysabri patients that weren't diagnosed till they were in their 50s and then started dmts - where do they stand - won't they be offered anything?


Another thing is the still intense focus we all still have ( docs and patients) on lesion load and 'new activity'. We must remember that it is no longer viable -it never was- to just use these to gauge progression. There are other things going on in the brain and to do with the cns that still can't be measured or detected accurately that also contribute to our disease progression.
Maybe lesions do stop after a while and this other damage takes over?
The dmts MAY slow this. Like everything to do with ms, for the most part -its a personal opinion based on an individuals experience - doc and patient .
Everything is MAY... or MIGHT... help...be ms....or something else............etc
After all this time, NOTHING to do with ms - cause, type,progression, outcome, treatments etc has CONCLUSIVELY been determined.
Its still trial and error.
So I agree with what student Devyn Parsons said.


Fishy trout , i asked a Doc recently what he thought of Lemtrada and Ocrevus, hadn't heard of them, me-( you may think i'm being harsh) but HONESTLY....... this person has ms too and on Tysabri


Any hooo keep talkin guys! it lessens My isolation
Caroline.

[Fishytrout]

CarolinemfWell I, like so MANY others, don't know what to do so I am staying on my current medication regime. I think this thread is a VERY good one, so we can all discuss this craziness with the DMD's.

[Tawanda]

CarolinemfWell I, like so MANY others, don't know what to do so I am staying on my current medication regime.

At least you can take comfort in having covered all your bases! As a wise friend once said, there is always a "worse" when it comes to MS!

At least all of us at MSW can still type...Even if the Internet had existed when my mother had this disease, I assure you she couldn't have typed a single key! I have truly seen the rock bottom when it comes to this disease with Mom, and as long as you can still operate a computer, are not almost completely paralyzed, and can stll talk, you haven't hit it!

[Carolinemf]

Yep. Any time i think of my aunt and uncle or hear about the problems others face I feel so fortunate to be still able to do as much as i can after about 33 yrs.
All the best
Caroline

[MarkLavelle]

However, the available observational data suggests it may be reasonable to start a conversation about stopping in certain patients [...] some stable relapsing-remitting MS (RRMS patients), as young as 55 to 65 with no new lesions in the last 5 years

I'm in that category, and my neuro brought this up when I saw him Thursday. He thinks I fit the 'burnout' pattern well and recommended I think about stopping Copaxone (while continuing Vitamin D3).

I'm pretty sure I'll decide to stop Copaxone by my Nov. appointment (yippee!)...

[marti]

Errrr...I do get isolated and lonely w/this stupid disease and I do not feel like going out much. I am somewhat forced to go to my neuro, though. He really has no personalty, all business. Nobody would pick him as their first invite to a party or anything, including me!

I don't really get that feeling of isolation or loneliness because I am somewhat of a "hermit". I would LOVE to be left alone, but get precious few moments to myself. I am caregiver to a difficult husband with a terrible disease. So, I am taking care of him, but have no one to help me. That is the thing I have trouble dealing with... being a sole caregiver, housekeeper, cook, pet care giver... all the everyday chores that get harder and harder for me to handle.

[Mamabug]

I had a conversation with my MS Specialist about this a year or two ago. I don't remember how she worded it, exactly. When I asked her about MS "burning out", she responded with a different term. She did say that, sometimes, she has taken patients off of their DMT's. But, not until after they've been relapse-free for at least 5 years.

Dr. Lynch does an MRI once every 5 years to check on progression; my last MRI was in 2013. My last MS flare was in 2014.

I'd be a little bit nervous about going off DMT's because Copaxone has been so effective for me, and life and MS flares were pretty horrible for the years prior to Copaxone. But, the possibility appeals to me. If Dr. Lynch, in a couple of years, thinks it might be a good idea for me to consider, I'd certainly think about it.

[Carolinemf]

Hi again,
Sorry if i'm being anal

But the comments i made earlier and similar to what others have said in other threads seems worryingly to be getting brushed aside IE:

Another thing is the still intense focus we all still have ( docs and patients) on lesion load and 'new activity'. We must remember that it is no longer viable -it never was- to just use these to gauge progression. There are other things going on in the brain and to do with the cns that still can't be measured or detected accurately that also contribute to our disease progression.

Most comments are still focused on lesions and relapses as a reason to stop dmt's.
I don't believe ms ever 'GOES AWAY' it changes the manner of presentation.

It scares me to think that others may get this impression from reading these posts.
It is fine if one has decided on any particular course of action - as long as it is based on current info.
And lession load and relapses is no longer considered a reliable indicator of progression
JMHO,
All the best,
Caroline

[Thinkimjob]

Well, here's hoping. 🙄
Twenty years has been long enough.
I have a feeling it's only going to get worse.

[KoKo]

Most comments are still focused on lesions and relapses as a reason to stop dmt's.

The current info appears to be that the anti-inflammatory drugs for treatment of relapsing-remitting multiple sclerosis have little or no efficacy in progressive multiple sclerosis without inflammatory lesion activity.

I don't believe ms ever 'GOES AWAY' it changes the manner of presentation.

Yes, MS most often transitions from the inflammatory phase to the neurodenerative (progressive) phase.

Take Care

[ru4cats]

I was diagnosed at 58 1/2 and immediately went on Tysabri. Last October I began the process of extending my infusion schedule from 28 days to 35, and if my MRI is unchanged in July, I will ask to entend my infusions to every 42-45 days. In another 6 months, I'll consider every 50 days or so.

I have no intention of stopping my DMD. I've lived long enough to remember, "Coffee is good!", "Coffee is bad!", "Coffee is good", "Coffee is bad!" etc. etc., etc. Many of these newer MS drugs have no long term track record, and new information about MS seems to be arriving almost daily (and that's a good thing!). Since I'm JC-, continuing some use of Tysabri seems like a no-brainer for me, but reducing the amount in my system, doesn't seem like a bad thing, and so I'll continue...

[MSLazarus]

I am 69, a farmer, and so glad my neurologist understands that I want to keep farming

"It would be a mistake at this point to tell a patient, 'You can come off your DMT and you'll be fine.' There's no evidence to support that," said medical student Devyn Parsons, of the University of British Columbia in Vancouver.
However, the available observational data suggests it may be reasonable to start a conversation about stopping in certain patients -- particularly secondary progressive (SPMS) patients, ages 65 and up, with no new lesions in the last year, and some stable relapsing-remitting MS (RRMS patients), as young as 55 to 65 with no new lesions in the last 5 years, and 65 and up with no new lesions in the last year, Parsons told CMSC attendees.
But one CMSC attendee called stopping DMTs "dangerous. When we treat with a DMT, we do it because we know 20% of those patients are destined to get worse. You're saying we should stop the drug, and let those people who are going to progress do it, and we'll treat them again. This is giving license to payers to deny people therapy that physicians think they need. This is a very dangerous thing to put in the MS literature. It will only be used for harm to MS patients."


https://www.medpagetoday.com/clinica...ges/cmsc/65709

Hello,
I have a long history of taking meds starting with being one of those early takers of betaseron when it became available through a lottery.

It is now 27 years later. Betaseron.to avonex...to copaxone for years. Then High doses IVIg twice a month for 8 years. Novantrone for 2 years. Now rituxan for about 5 years. ( I am sure there was more in between)

When my rituxan infusions wear off I lose strength, energy, ability to think clearly and other abilities. Thank heavens my neurologist does not think I should stop doing meds.
Linda

[Tawanda]

I have no intention of stopping my DMD. I've lived long enough to remember, "Coffee is good!", "Coffee is bad!", "Coffee is good", "Coffee is bad!" etc. etc., etc.

Hahaha! And eggs are good again too? And a bit of alcohol? Some sunshine without sunscreen from head to toe?..Uhhh...jury is still out on that one. And that red dye # something turned out to be false alarm.

I remember when chemo. was almost as deadly (or maybe even deadlier) than the original cancer. Surely, there has been some huge improvements with most medical treatments since I was a youngin'.

You can't live fearing EVERYTHING!