A question for old-timers only

[RoyceNewton]

G'day. Has anybody heard from or talked to their Neurologist and been told than our dear friend wears itself out after 20 or so years on Disease Modifying Therapy? Just curious I overheard two people talking at the Drs office .

Royce😀

[Robsmom]

I never heard that, but as you age your immune system slows down. I am no longer on a DMT. When your immune system slows down and the DMT's kill you B cells, it can cause other problems, so they stop the DMT. I've been off for over a year and so far so good. I'll be 70 in 3 months.

[felafelbowl in reply to Robsmom]

that is the same info i was given and i went off my dmt a year ago with no problems. i am 70.

[Cwacker in reply to felafelbowl]

I too have been off of my dmt for the past 4 yrs with no problems I’m just about 68

[NorasMom]

I kind of have to echo Robsmom on this one. I've never heard it phrased specifically towards DMT's, just that things slow down in general as we age.

[twooldcrows]

haven't heard it that way ,but did hear that after the age of 70 they don't work for us ...i stopped mine a year ago also...feel great ...

[donna0329]

In May 1994, when I was dx, the neurologist said "MS burns out" around age 55? But that's not accurate, perhaps the "inflammatory phase burns out" and becomes more of a neurodegenerative phase?

There were no DMTs in the USA, Betaseron was on a lottery, Avonex hit the USA market in 1996. I started self-injecting Avonex in September 1997-March 2022. After I started Menopause, I switched to Aubagio in April 2022, which I continue today.

Although my neurologist says I will stop my DMT at age 65? But, Dr. Aaron Boster disagrees with that philosophy. He says to maintain a DMT for life. Aubagio is less extreme than Ocrevus, etc. He recommends stepping down; yet continuing.

My MRIs have been stable since May 2004. I'm a bit confused. With the ease of Aubagio, I may want to continue until age 70?

[CatsandCars in reply to donna0329]

There has been quite a bit of discussion on this subject on this forum. Patients have a right to decide whether to stay on their current therapy, move to a less risky medication (de-escalation), or stop altogether. However, it's important to understand the potential consequences of those actions.

For a while, it was considered acceptable to stop meds at a certain age due to the immune system slowing down as you age. I believe the experts did a 180° on this at ECTRIMS last year and said that patients should stay on their DMTs. Neurologists are still recommending/going along with patients quitting, though, from what I can see on the forum.

Aaron Boster is adamant about "treating until death" and recommends de-escalating to a less risky DMT as you age, such as stepping down from Ocrevus, for example, to Aubagio. He says this is because while 70% of patients who discontinue DMTs will do well, 30% will experience disease progression. That's not an insignificant number. So, Donna0329, if you're on board with his philosophy, you would continue to take something for the rest of your life. At this point in time, this appeals to me, since I wouldn't want to be one of the 30% who experiences progression.

I do understand that some patients, particularly those who have been harmed by DMTs, or are worried about the risks of adverse events, are more comfortable stopping treatment.

[AquaZumbaFan in reply to CatsandCars]

Very well said, CatsandCars! I agree with you completely

[CatsandCars in reply to AquaZumbaFan]

Thanks!

[Robsmom in reply to CatsandCars]

Oh, I quite agree. My doctor believes as long as your MS is active it should be treated. My MS has not been active and my B and T cells were getting low, so I decided to stop and he agreed.

[CatsandCars in reply to Robsmom]

I'm very happy for you - and others -that you were able to do that. The doctor I'm referring to said that 70% of patients would be able to stop without having any progression. It's interesting that your doctor checked your B and T cells, which makes a lot of sense. I haven't read about that being a criteria. Since the B cell depleters haven't been around all that long, it would make sense that as time goes by, more patients would fall into that category. Adding a drug like Aubagio at this point would make sense for some patients though, because it works by targeting inflammation, not by affecting the B cells. It's not as good at preventing relapses, but it's good at preventing progression and brain atrophy. Although now that insurance companies aren't paying for brand name Aubagio anymore, some people are finding that the generic versions aren't performing like the brand name did. It will be interesting to see what changes are coming in the future!

[felafelbowl in reply to CatsandCars]

are you a medical professional?

[CatsandCars in reply to felafelbowl]

No, felafelbowl, I'm definitely not! I just follow Dr. Boster, who's an MS doctor who also makes YouTube videos that really informative, and the MS-selfie blog by Gavin Giovannoni at Bart's in London, and I like to read articles about research that comes out. I'm sorry if I sound like a know-it-all. I'm personally uncomfortable with the idea of stopping treatment, so I think it's really important that people know that you don't have to stop completely. It doesn't seem to me that many neurologists are having a conversation about de-escalating, fir example, just stopping. But I know there are good reasons for patients doing so, and of course it should always be up to the individual person and their doctor. And there may very well come a point where I will feel differently myself in the future!

[felafelbowl in reply to CatsandCars]

just so you know my doctor was very careful. i had to have a certain time with no relapses or new lesions and had to have MRIs before and after going off the medication and i was on glatopa not one of the newer meds.

[CatsandCars in reply to felafelbowl]

I'm glad to hear that your doctor was confident that you were/are stable enough to discontinue the Glatopa, and that you're still being monitored. When the time comes, I may feel more comfortable with it, who knows? Are you happy not to have to do injections any more?

[felafelbowl in reply to CatsandCars]

yes

[mrsmike9 in reply to donna0329]

"MS burns out at 55" ??? I was diagnosed at 55!

[CatsandCars in reply to donna0329]

Of course, you and your doctor can reevaluate and decide what's right for you over time. I'm just clarifying what Boster says. He gets quite animated over the subject! 😊

[kdali]

Mine calls it "fizzle out", but most say "burn out" and Prof G wrote an article on MSelfie about burn out not really being a thing. I always heard that around 65, as the immune system peters out, so will MS. I have never heard this about meds or related to time on meds.

[Helpmeup]

I had been on 7 different DMT's over a period of about 25 years. My MRI's, fortunately, have been stable over the last several years, and my Neurologist was fine with me stopping last year when I was 64. I have been DMT free for a year and a half now, and my M.S. is stable. It was a very personal decision to stop treatment, but it was the right decision for me. I would recommend discussing this topic with your doctor, do some research, do some soul searching, and then decide what you feel is right for you. All the best. 😊

[hairbrain4]

My MRIs have been stable for 10 years & MS in remission for almost 3 years. I am stopping my meds this month. My Neuro agreed that I can stop. I told her that if symptoms start I can always get back on my meds. I turn 70 in March.

[stepsforNeeC]

Basically, what has been observed in some older adults is fewer and fewer exacerbations within a time span! The doctor and individual decide “pros and cons “ of discontinuing DMT(s). Researchers are still exploring other factors such as if a flare returned later would the damage be greater? Jury is stuck with uncertainties! NeeC

[RoyceNewton]

G'day For everybody that answered my question yesterday, thank you. My question was answered and now I have some more thinking to do, ha ha it never ends, but I will work it out eventually.

Thanks very much everybody,

Royce🥰

[Texandyroe]

Howdy! Actually, my neurologist (a MS specialist) never put it like that, exactly, but, because I developed PML, after having been on the same DMT for over 20 years, and because I am over 70 years (by quite a bit), he took me off any DMT. I’ve been off for over 2 years and feel great. It’s onderful having the freedom of not having to go in every 4-6 weeks for a treatment.

[CatsandCars in reply to Texandyroe]

I'm so glad to hear that you're doing well!

[agate]

I'm 84 and went off Glatopa 6 months ago after 3 years on it. I resumed this glatiramer acetate after 10 years without any DMD. Before that I tried Avonex for 3 years, then Copaxone (daily) for 3 years. The Glatopa was glatiramer 3 times a week.

I haven't noticed that I'm getting worse since stopping the Glatopa. In fact, I'm very much better in one way: I no longer have the very painful pains that would wake me up and keep me awake at night or be with me during the day. They disappeared like magic.

The DMDs haven't been tested on older folks, and so not much is known about what they might do to us after a certain age. And older bodies are different in many ways. With all due respect to Dr. Boster's expertise, proceeding with caution might be the best way to go if you're older with MS and wondering about a DMD.

[Tazmanian]

I am 62 and my neurologist hasn't said anything

[carolek572 CommunityAmbassador]

When I started Ocrevus in 2018, I understood that ‘ms’ would stabilize after 5 years or so while on Ocrevus. What I thought was I could stop being on this DMT. I am not sure that is the case as I am still on said DMT. I am not sure if my neurologist would subscribe to stopping my DMT at any age but I will ask at my next appointment. Keep Smiling

[jackiesj]

Hi Royce...heard this also....everytime i see neurologist...same tests but if im tired or a med delays my count by 7?....my cognative abilities wane. hope they catch me on a good day...oh darn they retired also.. Im a roolercoaster and i have heard some do get off meds and live life. everyone is different. As we get older they also do not want to pay for as much. i hope you may enjoy each day!

[Greentime]

My neurologist is an MS specialist and she attends ECRTIMS every year. I have never been on anything stronger than Avonex. She advised I could stop, which I did 1 1/2 years ago. Because a not insignificant percentage worsen after stopping DMT's and because they have never been tested on older patients, it is a very difficult, personal decision to make. My doctor said that Avonex wouldn't be doing much/anything for me at this point. She said my exercise program is doing more. Still, I worry about constant low grade inflammation and brain shrinkage. @CatsandCars, I want to find out more about the affect Aubagio has on this. It seems to me that, as ever, nobody can know anything for sure when it comes to MS.

[Mayzee12]

I ask my nuero about my quiting my dmt he said no.

[RoyceNewton in reply to Mayzee12]

thanks that is what I am thinking.

[Mollyabigail]

There is always the discussion of docs who take their patients off DMT's at age 65. So I posed that question to my (awesome) neuro specialist. He said not in my case, because I was a "late bloomer." I was diagnosed at 60. He said given that I am so close to 65, & only been on a DMT a few years, he will leave me on a DMT indefinitely.

I WISH this crap would wear out! Too many folks here have struggled for decades. Wear out. Nope, have not heard of it. But I am only a few years in.