Ginny Boynton

Price,

Please let me know if you have more thoughts about ways to improve my strength. Has there been any more discussion about Catalyst making Ruzurgi?

When I asked in two forums about cell cept, several people said they didn’t have good experience with cell cept, but they are not doing well on Firdapse and did better on Ruzurgi.

Thank you Price. I’m really struggling. I hope they get a move on. As soon as the current supply runs out there are going to be a lot of people with issues.

I was much stronger on 3,4 DAP and Ruzurgi than I am on Firdapse so I hope Catalyst manufactures Ruzurgi so I can see which works better for me.

I was much stronger on 3,4 DAP and then Ruzurgi than I am on Firdapse and am still hoping that Catalyst manufactures Ruzurgi so I can try it again to confirm which medication is preferable for me, but I don’t have any side effects with either medication.

You’re welcome Debbie.

Debbie,

There are at least two other Facebook groups – all of which are helpful.

https://www.facebook.com/groups/1534530249930144

https://www.facebook.com/groups/1666194810327716

Please feel free to reach out to join these groups as well. You may find LEMS patients who are near you geographically.

Also, here’s a doctor at the University of…[Read more]

What great news Ashley! Did you really start Firdapse for the first time just within the last two months? I remember how amazing the transition was when I began taking 3,4 DAP (Ruzurgi) in 2001. Do you take any other medicine to enhance the Firdapse? I also take Mestinon, Mestinon Timespan, Prednisone and Cyclosporine.

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]