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Price Wooldridge replied to the topic Would you participate in a clinical trial? in the forum General Questions and Topics 2 weeks, 6 days ago
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]
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Jessica Jones replied to the topic Would you participate in a clinical trial? in the forum General Questions and Topics 2 weeks, 6 days ago
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]
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RDT replied to the topic Who’s Rarer? Myasthenia Gravis or LEMS? in the forum General Questions and Topics 2 weeks, 6 days ago
do you have the link for these lems percentages? Thanks
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RDT replied to the topic Would you participate in a clinical trial? Pt. 2 in the forum General Questions and Topics 2 weeks, 6 days ago
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] -
Price Wooldridge started the topic Would you participate in a clinical trial? Pt. 2 in the forum General Questions and Topics 3 weeks, 1 day ago
As mentioned in my previous topic, there is a drug in pre-clinical study for LEMS that may, at some point, do a full clinical trial for FDA approval. The drug is efgartigimod.
Here are some additional factors to think about before saying yes, or no.
Will I receive the investigational drug or a placebo?
How will the treatment be given to…[Read more]
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Price Wooldridge replied to the topic Would you participate in a clinical trial? in the forum General Questions and Topics 3 weeks, 5 days ago
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.
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Price Wooldridge replied to the topic Would you participate in a clinical trial? in the forum General Questions and Topics 3 weeks, 5 days ago
There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.
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Price Wooldridge replied to the topic Would you participate in a clinical trial? in the forum General Questions and Topics 3 weeks, 5 days ago
There is no announced trial recruiting yet, but one is expected in 2024. You can always check clinicaltrials.gov for available opportunities.
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Tracey Van Hoof replied to the topic Would you participate in a clinical trial? in the forum General Questions and Topics 3 weeks, 5 days ago
Is this in addition to Firdapse or replacing it?
Tracey
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Amber replied to the topic Would you participate in a clinical trial? in the forum General Questions and Topics 3 weeks, 6 days ago
Where can I get info on this trial? Yes I would do it in a heartbeat.
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Daisy became a registered member 4 weeks ago
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Kevin Schaefer replied to the topic Zoom Social Call Reminder for May! in the forum LEMS Community Zoom Socials 4 weeks, 1 day ago
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!
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Price Wooldridge started the topic Would you participate in a clinical trial? in the forum General Questions and Topics 4 weeks, 1 day ago
There is a drug in pre-clinical study for LEMS that may, at some point, do a full clinical trail for FDA approval. The drug is efgartigimod.
Given that LEMS patients will be asked to participate in these trials, have you considered whether you might opt in?
Recently I attended a webinar on this very subject, and it can be complex. Here are…[Read more]
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Wanda Grischkowsky replied to the topic Would you switch to taking 100 mg daily of Firdapse? in the forum Amifampridine (Firdapse and Ruzurgi) 4 weeks, 1 day ago
I currently take 60 to 70mg per day and feel it isn’t enough sometimes. I am unsure if I would increase to 100mg.
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Wanda Grischkowsky replied to the topic Is LEMS your only autoimmune disorder? in the forum General Questions and Topics 4 weeks, 1 day ago
I have autoimmune diabetes (Latent Autoimmune Diabetes in Adults), which was diagnosed one year ago.
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Alan Stone replied to the topic LEMS walking (video) in the forum Living With LEMS 1 month 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.
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Price Wooldridge replied to the topic LEMS walking (video) in the forum Living With LEMS 1 month ago
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.
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Anngail Norris replied to the topic LEMS walking (video) in the forum Living With LEMS 1 month ago
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.
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Price Wooldridge replied to the topic LEMS walking (video) in the forum Living With LEMS 1 month ago
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]
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Price Wooldridge replied to the topic Cancer Screening After Your LEMS Diagnosis in the forum The Big C 1 month ago
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. - Load More
@daisy123 Hi Daisy and welcome to the LEMS Forums at BioNews. We’re happy you have found us and joined. Please read the Using Our Forums section and then browse the topic areas for your interests.
I’m glad you have finally gotten a diagnosis which will hopefully get you on an effective treatment plan.
Please bookmark the main…[Read more]