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Is there an unofficial time where you age out of your dmt?

A MyMSTeam Member asked a question 💭
Lakewood, CO
August 5, 2023
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Answer Summary

Members shared personal experiences around aging out of disease-modifying therapies (DMTs) for MS, with opinions ranging from stopping around... Read more

Members shared personal experiences around aging out of disease-modifying therapies (DMTs) for MS, with opinions ranging from stopping around age 65 to never, depending on the individual and their doctor. Several members described their transitions from RRMS to SPMS, noting signs like increased leg weakness, fatigue, foot drop, and changes spotted during routine neurology exams, with one member offering the perspective that SPMS can feel more predictable than unpredictable relapses. A recurring theme was the importance of listening to your body, staying in close communication with your neurologist, and recognizing that aging with MS adds complexity to treatment decisions that no standard guideline can fully cover.

A MyMSTeam Member

@A MyMSTeam Member Hi Andy, that is a question I have longed to have answered; what did your Neuro point out as when you transitioned to SPMS? What was the clue or evidence?

August 6, 2023
A MyMSTeam Member

DMT's are designed to reduce the frequency of relapses - if and when you progress to SPMS, there is no benefit in continuing with DMT's. I found that I did not recognise the transition to SPMS, but my neurologist pointed it out.

I am on a gentle progression now, with no 'cliff edge' in sight. There are no DMT's licensed in the UK available on the NHS.

MS is always progressive, but at least I can see the way forward now, with no unexpected 'drops'.

August 6, 2023
A MyMSTeam Member

@ Kerry4 since I just transitioned last year, I can tell you what happened for me. I noticed I couldn't mow as much of my yard at first, then couldn't walk nearly as far as before without stumbling or dragging a leg. Then I started falling because of my footdrop, one so sever I ended up in the ER with a complex lacerated ear. That is just my story and is likely extreme as I am a Marine, just listen to your body, if you feel changes, talk to your neurologist. Don't follow my example :)

August 7, 2023
A MyMSTeam Member

Thank you Andy for responding to my question. Did you notice any changes in the way you felt after transitioning out of ms meds?

August 6, 2023
A MyMSTeam Member

Depends on who you ask. some research says 65, some says never. Guess it depends on the risk you want to take, and your physician wants to take. As someone who just transitioned to SPMS after 30+ years of RRMS, if you can afford the meds and tolerate them well, and they are keeping you mostly relapse free, I would stay of them as you wouldn't try to fix something not broken. Going to SPMS is not fun :(

August 5, 2023

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