Ginny Boynton

Ashley,

Will you arrange wheelchair transport at the airports? That’s a good way to conserve your strength.

Ginny Boynton

Thank you Price. I can probably fashion it off of Pat McEnany’s email address.

Thank you Price. I’m really struggling with Firdapse so this is good news.

Price,

Do you have an email address for Ken Ecker?

Ginny

This is really good news Price. I have had at least 7 days since I started taking Firdapse where it just doesn’t “hit” when I take it – even going back to bed for it to work. I’m also considerably weaker. It’s extremely frustrating.

Looking forward to attending the zoom meeting on the 30th.

Here is a specific case regarding blood pressure medication being problematic.

https://pubmed.ncbi.nlm.nih.gov/12622445/

I was diagnosed in 2001 after just a few months of noticeable weakness.

Jacobus didn’t seek FDA approval at first because it was providing the drug for free and was happy to do so. I’m sorry your neurologist wouldn’t complete the paperwork to get you on 3,4 DAP. I had almost 18 years of a totally free medication with oversight for my LEMS including blood work and EKGs.

Jacobus actually received Orphan Drug Approval…[Read more]

Gary,

I’m sorry you haven’t done well on Firdapse. We have a number of people in our Facebook group who don’t either. My problem is that I take 90 mg. of  Ruzurgi but am only able to take 80 of Firdapse (insurance won’t pay for more. ) We have LEMS patients who have had to be hospitalized on Firdapse but do well on Ruzurgi.

It’s distressing to…[Read more]

That’s disturbing news regarding Catalyst not currently working on a formulation of amiframpridine without phosphate. Do you think it doesn’t fully understand how deleterious Firdapse is to some people’s health? If it truly cared about its patients, it would be attempting to do something. Do you think we need to reach out to it so they have a…[Read more]

Yes it is done that way in the UK because neurologists there pushed back and said there was no need for the NHS to pay the ungodly price for Firdapse when 3,4 DAP (Ruzurgi) worked just as well. I don’t believe 3,4 DAP will be permitted to be compounded in the  US. When Jacobus was first working with the FDA 30 years ago there was actually a…[Read more]

Thanks Price. My question relates to whether you think Catalyst will try to produce a version without phosphate salt which can be used by those who are harmed by Firdapse? There is no course of action that can be taken with a person’s neurologist which will help these individuals.

Despite these trials, there is evidence both anecdotally and from patients’ physicians that Firdapse doesn’t work as well for them as Ruzurgi and some patients are even harmed by Firdapse but not by Ruzurgi. Do you have any thoughts about what will/can be done to make sure these patients don’t lose the mobility they have received through Ruzurgi?