Activity

Jessica, I’ve heard the same from several LEMS patients. When you’re already on an effective treatment plan, stepping into the unknowns of a clinical trial could make that decision much more nuanced.

Vyvgardt works for MG and word I have is they expect the formulation of efgartigimod, based on the same mechanism of action, will hopefully…[Read more]

I know someone diagnosed with MG who uses Vyvgart and it works very well for him, but MG and LEMS are different fundamentally, so I’d be interested to know the biochemistry behind how they expect Vyvgart to work for LEMS and MG both effectively.  I have finally achieved balance with my current treatment and am stable, so it would be difficult for…[Read more]

do you have the link for these lems percentages? Thanks

YES! I just had a new consultation with a new neuromuscular neurologist, since my current neuro doesn’t have any more LEMS treatments options for me.
The new neuro plans to reach out the pharmaceutical company Argenx directly to see if their FDA approved Vyvgart could be used for me as a single use patient study instead of waiting for it to go t…[Read more]

This is currently not known because the trial has not started. I believe this will be a consideration in the design of the trial. Right now a trial is not expected until next year.

There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.

There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.

Is this in addition to Firdapse or replacing it?

Tracey

Where can I get info on this trial? Yes I would do it in a heartbeat.

Hey y’all, here’s the meeting link. Feel free to join even if you can only come for part of the time. See you then at 5:00 pm EST!

I currently take 60 to 70mg per day and feel it isn’t enough sometimes. I am unsure if I would increase to 100mg.

I have autoimmune diabetes (Latent Autoimmune Diabetes in Adults), which was diagnosed one year ago.

The Miami Dolphins have a wide receiver last name Waddle and when he makes a great play his teammates gather around him and do the “waddle” dance. I’ve been doing that dance since I was diagnosed in 2016.

Interesting description. I have video of myself when my hips were fairly week, and “penguin” might describe it. At least it looks somewhat stiff-legged.

I kind of walk like a penguin. It’s hard to keep my balance so I take smaller steps wider apart and with the side to side motion shown here. I’m not sure it’s my hips but my balance that is my problem.

That’s a very good video illustrating the hip weakness from LEMS. Personally I don’t recall if I looked like this when I had my initial crisis in 2009 and couldn’t walk or get out of a chair. Now I just look a bit stiff legged when my hips are weak. But, I have recently seen videos from two other LEMS patients who do now or have exhibited this…[Read more]

That’s a good question on contrast. I’ve only had it once as I recall, when they did my initial CT scan for cancer at my LEMS diagnosis. Every other CT I’ve had has had no contrast.
I don’t know the answer whether it’s contraindicated.