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When is a good time to stop taking dates? I what's diagnosed in 1996. Hi I have secondary progressive ms.

A MyMSTeam Member asked a question 💭
Mount Airy, GA

I got a sprinter in my hand and ended up in the hospital with full blown sepsis.
My neurologist wants to do a trial of no dmt's

June 1
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A MyMSTeam Member

Me and my neuro made the call my last appt on Tues since I went SPMS in 2022 and haven;t had a relapse in about a decade and my head and spinal MRI had no change. Since there are no DMT specificaly for SPMS, it made sense to both.

June 1
A MyMSTeam Member

It is an individual thing honestly. Mine started with a slowing down (I couldn't mow the whole yard in a day), then started having falls out of nowhere, and then the foot drop reared its ugly head. All combined got me reclassified. BTW then out of nowhere several falls with some substantial injuries. Never fell before, as a football athlete and Marine, so balance was good,

June 1 (edited)
A MyMSTeam Member

@A MyMSTeam Member How does someone know when they transition from RRMS to SPMS ? Is it just your symptoms getting worse without active lesions on an mri, or do you get new symptoms?

June 1
A MyMSTeam Member

Thank you for explaining that for me . 😊🤗

June 1
MyMSTeam

What a journey — diagnosed in 1996, dealing with SPMS, and now recovering from a serious hospitalization. That's a lot, and it makes complete sense that your neurologist is considering a DMT trial pause.

For people with SPMS, stopping a DMT can actually be a reasonable option in certain situations. Guidelines suggest that Show Full Answer

What a journey — diagnosed in 1996, dealing with SPMS, and now recovering from a serious hospitalization. That's a lot, and it makes complete sense that your neurologist is considering a DMT trial pause.

For people with SPMS, stopping a DMT can actually be a reasonable option in certain situations. Guidelines suggest that doctors may consider stopping a DMT for people with SPMS if:

- Side effects or health risks outweigh the benefits
- The DMT isn't proven to be slowing progression
- There is significant disability from advanced nerve damage Given the serious infection experienced, the risk-benefit balance of continuing a DMT has clearly shifted — many DMTs suppress the immune system, which can complicate recovery and increase infection risk.

A few things worth discussing with the neurologist during this trial period:

- How often will MRIs be scheduled to monitor for new lesions?
- What signs of disease activity should be watched for?
- What would trigger restarting a DMT?

Stopping doesn't have to be permanent. If disease activity increases, treatment can always be revisited.

June 1

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