DMTs in Aging MS Patients: When and How to Stop

[BettysMom]

The efficacy of disease-modifying therapies (DMTs) goes down with advancing age. One meta-analysis of 38 randomized trials and 13 therapies found that benefit with respect to disease progression generally disappeared by the age of 53. "Age is an essential modifier of drug efficacy," said Ms Ross.

medscape.com/s/viewarticle/...

[Linda3579]

Hi BettysMom

Thank you so much for this great article! I am a 77 year women on Ocrevus. I’m trying to decide if I should discontinue it. Wishing you well. Linda 💕

[BettysMom in reply to Linda3579]

You are welcome. I stopped Avonex six years ago when I was 67. I have no regrets at all.

[Greentime in reply to BettysMom]

Exactly the age I stopped Avonex about 1 1/2 years ago. No regrets here either. But it is a difficult decision to make. Great article, thanks!

[hairbrain4]

I talked to my Neuro this week about going off of Vumerity & not taking anymore DMTs. She kind of balked at it but I reminded her that my MS has been in remission for 2years now. I haven't had any new lesions for over 10 years. I eat a healthy diet & have lost weight. Not to mention I'm 69 now. I don't think its going to be a problem if I quit. And if it is then I can start again. She agreed with that. So at the end of the year I will be going off DMTs. My husband isn't happy about it. He's afraid my MS will kick in again.I told him if it does then ill deal with it then just like I have in the past when it flared up while I was on meds.

[BettysMom in reply to hairbrain4]

Good for you. I stopped Avonex when I was 67. That was six years ago. I should have done it sooner. I didn't realize how sick it was making me till I was off it for awhile.

[Linda3579]

Thank you Betty and hairbrain. Those are very helpful comments.

[Robsmom]

Thank you for sharing that article. I'm 69 and stopped my Ocrevus infusions 5 months ago, so it's almost a year now without it. I feel well. On my next neuro appointment I am curious to see what my labs say.

[alsorenson]

Thank you for the post. I'm 70 years old diagnosed 2 years ago with progressive MS and started Ocrevus last year. MRIs last December showed no worsening, but mobility symptoms are getting worse despite getting more exercise since high school gym class (I had a heart attack in Jan and have been focused with cardio rehab). I have more energy and fatigue has ben less of a problem, but balance and mobility problems are progressing.

I'm concerned about side effects especially to my immune system. Last week I talked to my neurologist about discontinuing Ocrevus. She counselled Ocrevus may have positively affected lesion progression but the decision to continue Ocrevus up to me. She was in no way adamant about continuing Ocrevus. Not sure what I will do.

BettysMom, the article is very useful and timely, thanks so much for passing it on.

[Cutefreckles72]

Thanks for the article, BettysMom. I am almost at that age to stop or continue DMTs. Alot to think about. Thank you. 👍

[Amore55]

Very good article. I stopped all dmt’s in 2016 at age 55. It was the best decision for me. It took a long time to get the medicine washed out of my system, but I felt better and better after I stopped. I can do things now that I never thought I would be able to do again. I went from using a wheelchair and walker every day to hiking now every day and even running sometimes with my dogs! I changed my diet a LOT too. Good luck.

[BettysMom in reply to Amore55]

Good for you!

[CatsandCars]

Thank you for posting the article, BettysMom!

While it is always the patient's choice of whether or not to take a DMT, I hope you'll forgive me for pushing back a little bit on the the title of the article, though, which sort of implies that older people should stop meds at some point. Which is somewhat misleading if you read the article. In addition to just stopping, it talks about deescalation and possibly taking more moderate meds to as we get older due to our immunity waning and comorbid risks. Some respected doctors such as Aaron Boster and Gavin Giovannoni strongly disagree with stopping meds just because you reach a particular age. Giovannoni has mentioned in his blog that research on older, deceased MS patients often show evidence of disease activity. Boster says that in studies of older patients who stopped their DMTs, 30% of them had progression as a result. Of course, this means that in that particular study, two thirds of them didn't. Clearly, some patients who stop DMTs will do well, but it doesn't sound to me like the science says we should all throw away our meds at some point. "If, how, and when..." may have been a better title!

[Tazmanian]

Talk to your neurologist and I'm not stopping

[agate]

Thank you for posting this useful article. I recently stopped taking Glatopa (= Copaxone) after 3 years on it. My first DMT was Avonex, started when I was 61. I lasted 3 years on it, then passed out and fell one night a few hours after doing the shot. Not wanting that to happen again, I stopped the Avonex.

A few years later I started Copaxone daily injections and lasted 3 years on it as well. I went off of it because of some side effects (bowel urgency mainly) but when I was 79 I went back on it, this time the 3-times-a-week form. So once again 3 years was my limit, and then side effects caught up with me.

I think that the DMTs can do unpredictable things to people who are older. After all, none of these drugs was studied in older patients, and so who knows what they will do to us?

Since stopping Glatopa 3 months ago, the bowel urgency problem has pretty much subsided, and the increased arthritis pain and stiffness I'd been having has also subsided. I have osteoarthritis, and for the first year or more on Glatopa I was troubled by arthritis-like pain that would keep me awake at night when I'd done that shot.

I firmly believe in doing whatever a person can to halt the progression of MS. But I'm not convinced that everyone who has had SPMS for many years and is aging is going to get much benefit (or any) from those drugs. But it's up to each person to decide, of course.

[Mollyabigail]

Thank you, Bettysmom. Interesting. I am 63 & kind of on the fence about stopping my DMT. My neuro is no help. Haven't seen her in 2 years. She sends her NP in instead. So, I feel a bit alone in this.

[BettysMom in reply to Mollyabigail]

I know it is a difficult decision. It seems that a lot of neurologists do not support stopping DMTs for anyone. But they are not the ones suffering the adverse effects of these drugs. And most of us know our bodies a lot better than our doctors, who tend to go along with whatever are the "expert" opinions from researchers at the time.

[CatsandCars in reply to Mollyabigail]

It's a pretty big decision. Have you thought about talking to another neurologist?

[Mollyabigail in reply to CatsandCars]

Out of the blue yesterday, I got an automated call from an M.S. clinic in Cullman, AL some 240 miles away. I have been trying to get an appointment there for months. So, yes! I get to see another neuro. A specialist, finally. I am dropping my general neuro like a hot rock! 😂

[CatsandCars in reply to Mollyabigail]

That's fantastic! I'm so happy for you. 🥳🎉 I hope you get some real, caring advice. Let us know how it goes for you. Best of luck!

[Helpmeup]

Hi BettysMom, and thanks so much for sharing this. The last few years, there has been so much conflicting info on this subject. After a few years of reading that it's an option to stop DMT's after 55 if there have been no new lesions and stable MRIs for several years, I heard that at last October's ECTRIMS meeting, they did a complete 180 and reported that regardless of age and disease stability, aggressive treatment is being recommended. It is so difficult for patients to sort it all out with so much conflicting information.

In the end, it is a difficult decision that each of us have to make after a discussion with our doctor. Some will choose to stay on therapy, some will stop. It took me a while, but I finally stopped at 64, and have been off meds for almost a year and a half now. I am very happy with my decision to stop. It was definitely right for me. 🤗

[BettysMom in reply to Helpmeup]

Agreed. All DMTs have adverse effects and risks. I am not happy with the "expert" opinion that everyone needs aggressive treatment. I believe that many of us need to stop these drugs at some point. Be sure to read the new article I posted on Monday morning.

[CatsandCars]

It doesn't have to be aggressive treatment or all-or-nothing. People can do what they need to do. But as the article points out, deescalation to a milder drug is a real option. I don't understand why it is so rarely included in the conversation. If/when the time comes for me to consider my medication strategy for aging, I plan to consider all of my options.