#ECTRIMS2022 - DMTs Ease SPMS Disability Early But Not Over Time

[KoKo]

Back and forth we go....it's perplexing to see how these studies go round and round with DMT's slowing progression / not slowing progression.

DMT's work best when progression is mainly driven by inflammation, rather than by neurodegeneration.

We need new ideas for DMT's that slow or prevent the neurodegeneration type of progression.


DMTs Ease SPMS Disability Early But Not Over Time

Continuing treatment not found to slow long-term disability progression

"Results showed that patients in the treatment group had lower EDSS scores at the index date, reflecting a lower degree of disability, and that these scores tended to remain lower over the course of follow-up.

However, scores generally increased for all patients over time, and the rate of disability progression was not significantly different in treated versus untreated patients. This meant that treated patients had less disability in the earlier stages of their disease, but treatment did not slow the progression of their disease at later stages.

“Non-treated SPMS patients have generally higher EDSS values than treated patients, suggesting a beneficial effect of DMTs in slowing disease accumulation at earlier stages of the progressive phase,” Pontieri said. “However, as patients get older, staying on DMTs does not seem to slow [disability progression].”

“While DMTs might be beneficial in SPMS patients at earlier stage of progression, their effect might fade away as patients get older, stressing the importance of earlier recognition and intervention of progressive transition,” the team concluded."

#ECTRIMS2022 – DMTs Ease SPMS Disability Early But Not Long | Continuing Treatment Won't Slow Long-term Disability Progression | Multiple Sclerosis News Today

[dm0329]

Thank you so much for sharing this article!

FWIW, after self-injecting Avonex for 25 years (age 30 to 55), I just switched to Aubagio April 2022. I "officially" entered menopause now that I am 55, and the weekly intra-muscular injection served me well and kept me "looking so well" but, I "medically retired" at age 45, enough with the shots already! LOL

Now eight months into Aubagio 14 mg, my hair is falling out, will it be temporary? But, winter will arrive shortly in the Northeast, and I have a few great hats to wear. And, I heard that Aubagio is easy maintenance and still recommended for later years usage (per Dr. Aaron Boster).

Bonus point: I heard that Aubagio will be going generic next year (2023). Now, if we don't get the $2,000/year out-of- pocket maximum, perhaps I will only be responsible for 25% of $22,000/year. *cross your fingers*

[oceanpride]

Back and forth we go....it's perplexing to see how these studies go round and round with DMT's slowing progression / not slowing progression.

DMT's work best when progression is mainly driven by inflammation, rather than by neurodegeneration.

We need new ideas for DMT's that slow or prevent the neurodegeneration type of progression.


DMTs Ease SPMS Disability Early But Not Over Time

Continuing treatment not found to slow long-term disability progression

"Results showed that patients in the treatment group had lower EDSS scores at the index date, reflecting a lower degree of disability, and that these scores tended to remain lower over the course of follow-up.

However, scores generally increased for all patients over time, and the rate of disability progression was not significantly different in treated versus untreated patients. This meant that treated patients had less disability in the earlier stages of their disease, but treatment did not slow the progression of their disease at later stages.

“Non-treated SPMS patients have generally higher EDSS values than treated patients, suggesting a beneficial effect of DMTs in slowing disease accumulation at earlier stages of the progressive phase,” Pontieri said. “However, as patients get older, staying on DMTs does not seem to slow [disability progression].”

“While DMTs might be beneficial in SPMS patients at earlier stage of progression, their effect might fade away as patients get older, stressing the importance of earlier recognition and intervention of progressive transition,” the team concluded."

#ECTRIMS2022 – DMTs Ease SPMS Disability Early But Not Long | Continuing Treatment Won't Slow Long-term Disability Progression | Multiple Sclerosis News Today

none of this is surprising KoKo
I was hopefull at first but not so much now.
sadly. They have to find something better.

[Jules A]

So many of the MS papers strike me as too soon to actually know. It is like some of the medication trials that have weight gain as a likely side effect. They will publish study data on 6-8 week terms where weight gain is not especially remarkable because it is only 6-8 weeks! If they follow the participants farther out we seen more things and with MS sheesh it really could take decades to see clear patterns in my opinion.

The stop vs don't stop DMDs as we age prospect is on my radar now as I enter my last years of working and will consider whether I want to take the chance on stopping MS med after I retire.

[pennstater]

So many of the MS papers strike me as too soon to actually know. It is like some of the medication trials that have weight gain as a likely side effect. They will publish study data on 6-8 week terms where weight gain is not especially remarkable because it is only 6-8 weeks! If they follow the participants farther out we seen more things and with MS sheesh it really could take decades to see clear patterns in my opinion.

The stop vs don't stop DMDs as we age prospect is on my radar now as I enter my last years of working and will consider whether I want to take the chance on stopping MS med after I retire.

I think the key is how fast are strong DMTs started while Relapsing Remitting, hopefully delaying SPMS onset. Once Secondary progressive, different story.

Jules - I have been having same conversations with Neuro - to stop or continue on DMTs. I haven't progressed much in 10 years on Tysabri, but have some disability from early relapses. Is it the DMT preventing progression or am I fortunate in my disease course?

My Neuro discussed the results of the DISCO study, that looked at people 55 and older that stopped their DMTs (none were infusions though). It showed 7% chance of increased lesions. That being said, the new lesions could be vascular and age related or they could be MS. So again, no definitive answer

His recommendation was to stay the course and not risk it until further studies, but ultimately my decision.

[palmtree]

Ditto to you, Pennstater. I wish so much I could have started Tysabri when I first got diagnosed. I might have been able to avoid my most disabling flare. The PML worry is always there but I also think about Tysabri rebound.

I hope they can come up with something better than the choices we have, too. Like a cure. Or a vaccine to prevent it and all other immune disorders.

For now, all we can do is be informed and make difficult choices based on our personal priorities.

[pennstater]

Agree palmtree. For awhile, I played the what if game - what if diagnosed earlier, what if I started on Tysabri after diagnosis, what if (insert any question here...). But I knew it wasn't a healthy game to play. So back to reality and making the best decisions we can for ourselves.

[Jules A]

I think the key is how fast are strong DMTs started while Relapsing Remitting, hopefully delaying SPMS onset. Once Secondary progressive, different story.

Jules - I have been having same conversations with Neuro - to stop or continue on DMTs. I haven't progressed much in 10 years on Tysabri, but have some disability from early relapses. Is it the DMT preventing progression or am I fortunate in my disease course?

My Neuro discussed the results of the DISCO study, that looked at people 55 and older that stopped their DMTs (none were infusions though). It showed 7% chance of increased lesions. That being said, the new lesions could be vascular and age related or they could be MS. So again, no definitive answer

His recommendation was to stay the course and not risk it until further studies, but ultimately my decision.

Same here.
I'm hopeful the more studies, the more time, the more we learn.

[Mamabug]

After 5 years on Betaseron (which was relatively ineffective for me), followed by 11 years on Copxone (which worked much better for me), I chose to discontinue DMTs in 2019, at the age of 57. My last MS flare (and probably the last time I had inflammation in my brain) was in 2014. Although I was without flares after 2014, I noticed steady decline in my abilities.

I started seeing a functional medicine doctor in 2018 and significantly changed my diet and tried to rid my household and lifestyle of toxins, stress, etc. I try to exercise regularly and moderately (although I'm not as successful at that as I wish I was.)

I have remained relatively stable since 2018 (with the exception of 2020 when group exercise options were unavailable and I didn't substitute much at home with alternate exercise).

I don't regret going off DMTs. I no longer believed they were effective for me after I reached SPMS.

I currently do not have a need for assistive devices when I'm in my own home. But I use a cane when I leave the house; I need it when I go down curbs, walk on uneven ground, etc. I use a walker if I go to a park and need to walk on grass. I use a power chair for museums, zoos and other activities that involve much walking; I am unable to walk more than about a block.