-
Approval of 3,4 DAP good for us all
In the past few weeks I’ve read several articles on the approval and distribution of both Ruzurgi and Firdapse for LEMS patients in Canada. What a wonderful thing! Going back to my diagnosis in January, 2018, there was no Firdapse or Ruzurgi available. I was hearing about this drug called 3,4 DAP (3,4 diaminopyradine) on Facebook LEMS groups which I’d joined. They were talking about how wonderful it was for their Lambert-Eaton. But…further checking and it wasn’t actually available here in the U.S. I soon learned there was one drug company, Jacobus Pharmaceuticals, who was getting 3,4 DAP to patients as part of a trial. Calling them, I learned there was lots of paperwork, but it was doable. Try as I might, I couldn’t get my neurologist off high-center to get that done. At the time I was unaware another drug company also was in trials with a variation of the same medication, amifampridine phosphate. In June, 2018, my friend Dawn, wrangled me an invitation to a Catalyst Pharmaceuticals meeting in August, literally 10 minutes from where I live in DFW. How fortuitous! Out of those meetings I managed to get myself in their Expanded Release Program, getting amifampridine for the first time in October! The so called “miracle drug” by some, was now in my hands. You can see how easy that was, right? NOT.
And that’s the great thing I’m reading about now, the easier access to a great meditation for all LEMS patients, with the approval of both the FDA and Health Canada, of both Firdapse and Ruzurgi. At least in my case, it couldn’t have come at a better time. -
0 Replies
Sorry, there were no replies found.
Log in to reply.