Amber replied to the topic Weaker on Firdapse in the forum General Questions and Topics 1 week, 4 days ago
Ginny, so glad you brought this up. I have been fighting to get back on ruzurgi for a long time. Since I went on firdapse, like you, I can hardly walk long distances, whereas on the ruzurgi was able to do a full day at Disney no problem. I am on the immunoglobulin treatments from Hizentra which help a lot, and I tried earlier this year Rituxan,…[Read more]
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.
Amber replied to the topic Would you switch to taking 100 mg daily of Firdapse? in the forum Amifampridine (Firdapse and Ruzurgi) 1 month, 2 weeks ago
I am already on 100 since I was on 100 with ruzurgi. I need to go to up 120 but no success so far.
Amber replied to the topic Hello, just diagnosed. in the forum Introductions 2 months, 3 weeks ago
Hi Tim, sorry you’re one of us now but at least they were able to diagnose you. I had the same experience. I was super active, running, playing tennis, lost about 25 pounds and then it hit me at the age of 27. First I couldn’t go up stairs or ramps very well, then it was a struggle just to walk. I push myself hard every day. I have two kids and…[Read more]
Amber started the topic Looking for advice on rituximab treatments in the forum Rituximab (Rituxan) 7 months, 1 week ago
Hi, I’m looking for people who are currently on rituximab either long-term, or have just started it. I am currently on Hizentra IVIG treatments and firdapse. But not feeling great so my doctor said to do some research on rituximab. Curious what your symptoms are, how good do you feel afterwards? And how long does it last?
Amber replied to the topic Catalyst To Continue Ruzurgi in the forum Amifampridine (Firdapse and Ruzurgi) 9 months ago
I was told by catalyst that anyone who can’t take Firdapse, was able to get on the Ruzurgi while supplies last. It’s worth asking.
I truly hope they can bring back ruzurgi in the way it was made before, no modifications. It just worked better imo. I found just this week that firdapse works better on an empty stomach, or with very little food.…[Read more]
Amber started the topic Hi, I'm new here in the forum Introductions 9 months, 3 weeks ago
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…[Read more]
Amber became a registered member 10 months ago
Welcome to the Lambert-Eaton News forums @helloamber257 !
My co-moderator @pricewool and I are so happy you have joined our community!
We have members from all over the world with LEMS and have a ton of information to offer! I would love to hear more about your experience with LEMS!
Please take a moment to read the Using our forums …[Read more]