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Hi, I’m new here
Introduction, I was diagnosed with LEMS back in 2007 when I was 27. I’m now 42 and I feel like things are getting worse.
I’ve been doing at home IVIG treatments (doing them myself) for years and I’m taking Firdapse/mestinon. I was taking Ruzurgi but with the lawsuit I had to switch over to firdapse which I don’t think works near as well as ruzurgi. Anyone else experiencing this?
I even called Jacobus Pharmaceuticals and spoke with Lauren Jacobus, she said they basically had to sell their patent to Catalyst. So then I spoke with the Chief Medical Officer at catalyst and basically told him I needed to go back on Ruzurgi, and that the Firdapse doesn’t work near as well. He said they don’t intend on bringing Ruzurgi back and Firdapse has the same exact chemical that Ruzugi has. My doctor says the Catalyst patent expires in November of 2023. I’m hoping someone can bring back Ruzurgi.
I tried to get qualified to do the new Vyvgart infusions but don’t qualify.
I’m frustrated. I used to be able to get around and now it’s more difficult. Exercising definitely helps but it’s difficult to do that when you’re working a full time job at home. Lots of sitting in chairs all day. IVIG’s are necessary but don’t really help a ton.
Anyway I have two younger kids so it’s difficult to get motivated to take them places. My biggest question is what happens when I get older? It’s hard enough to get up and go to the restroom in the middle of the night now, I can’t imagine what my life will be like when I’m older and losing muscle, bone mass, etc. Maybe by then they’ll have something better??
I’d be interested in hearing about supplements or other things you guys have tried that has helped or even other medications.
Thanks,
amber
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2 Replies
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Hi @helloamber257
Welcome to our community!
First, I will say I haven’t had that experience, however I just started taking Firdapse about two weeks (maybe 3) ago. I had no experience with Ruzurgi because my neuro at the time didn’t want to participate in the expanded access program and forced me to choose between IVIG or Firdapse/Ruzurgi.
I’m sorry you’re frustrated. Many of us in the community are. It’s unfair to have them compete, however they did get FDA approved first and Jacobus found a loophole to get out of the Orphan Drug Acts exclusivity. If you’re unfamiliar with the orphan drug act, you can read about it here
I’m sorry you’ve lost mobility as a result of this. I know how frustrating and discouraging that can be, but there’s always ongoing research going on to find better treatment options and its likely they will find something more effective (hopefully in our lifetime.)
We are having a zoom meeting on August 30th at 5pm EST and we’d love to have you! I hope your able to join! This month we are spending some time talking about LEMS treatments and side effects. We will post the link for the meeting the day before on the forums in the “LEMS Community Zoom Socials” forum on this page.
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Hi Amber,
Can you please tell me whom you spoke with at Catalyst? I will follow up.
Thanks!
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