I was diagnosed at 30 with Mytonic dystrophy typd 1. Mexilitine has bern an absolute life changer. It does has effects on the heart. I had to ger a pacemaker ICD before i could start taking it, but ir definetly helps. Especially to tightness and mytonia.
53 mins ago
Hi Karen. I have DM2 and despite being symptomatic for over a decade, I wasn't diagnosed until 61. Suffer from pain in lower body mostly and am not able to walking far anymore. I was finally put on Mexiletine by a new Neurologist 4 months ago. It's to treat the Myotonia. Andi while it can not restore function or slow the progression, it has reduced the pain by about 40%. If it's pain support you're looking for, maybe talk to your doctor to see if it's right for you.
July 7
That's a great question — and it's actually more common than people think to receive a muscular dystrophy diagnosis later in life. While much of the research has focused on earlier-onset forms, there are still treatment options that may help manage symptoms and slow progression.
Here are some medications that are commonly Show Full Answer
That's a great question — and it's actually more common than people think to receive a muscular dystrophy diagnosis later in life. While much of the research has focused on earlier-onset forms, there are still treatment options that may help manage symptoms and slow progression.
Here are some medications that are commonly used:
- Corticosteroids (like prednisone or deflazacort) — help preserve muscle strength and slow progression, though they come with side effects like weight gain, bone thinning, and mood changes
- Vamorolone (Agamree) — a newer option approved in 2023 with fewer side effects than traditional steroids
- Givinostat (Duvyzat) — a nonsteroidal drug approved in 2024 that may help reduce inflammation and slow muscle loss Heart and lung health are also important to monitor, as MD can affect those muscles too. Medications like ACE inhibitors and beta-blockers are often used to support heart function.
It's really worth having a detailed conversation with your healthcare team about which options are the best fit for your specific situation and stage of MD. They can help tailor a plan that works for you.
June 30