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RUZURGI, the original 3,4 DAP- What does it do for your LEMS treatment?
Those who have had LEMS for a number of years have heard about 3,4-DAP. Many, myself included, where fortunate enough to be a part of the compassionate use program through Jacobus Pharmaceuticals. 3,4 DAP has since been approved as RUZURGI, treatment for pediatric LEMS patients. Like FIRDAPSE, RUZURGI also blocks the potassium channels and allows more acetylcholine into the neuromuscular junction. What exactly does that do for LEMS patients, however? For me it definitely gave me more endurance. I had already started MESTINON, which gave me more strength. How about for you?
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4 Replies
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Hi Dawn, I had been taking DAP since 2012 and was switched to Firdapse when it came out. I did much better on DAP. I have not heard of ruzurgi before is this an option instead of Firdapse? Is there a reason why you take ruzurgi instead of Firdapse. You said you take Mestinon is that the same as pyridostigmine? I can’t wait to speak to my doctor to see if this drug could be an option instead of Firdapse. I’ve had one seizure and I don’t want to go through that again
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Hi Linda,
Dawn is taking a break from the forum, but I’m happy to answer your questions!
Ruzurgi is the trade name for 3,4 DAP manufactured by Jacobus that was recently approved (2019) by the FDA for younger patients with LEMS. It can be prescribed for adults off label.
It is made with the same ingredients as Firdapse. The only difference is that Firdapse has amifampridine which keeps it more stable so it does not require refrigeration. Unfortunately, both of these drugs do have seizures as a side effect since they are essentially the same thing so it may not be an option if you experienced seizures on Firdapse.
There was a great article posted yesterday about Firdapse and Ruzurgi, you can view it here.
Yes, Mestonin is the generic name for pyridostigmine! Usually it works best combined with Firdapse, but you can take it solo. The two work together and magnify the effects of each other which is why they are usually given together!
Hope this helps!
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Hola a todos!!! Mi hijo tiene actualmente 20 años y fue diagnosticado hace 6 años. Desde entonces toma DAP 3.4. En principio comenzó con una dosis de 60 mg y con el tiempo ha ido disminuyendo la misma hasta llegar hoy a 30 mg diarios. Han ido disminuyendo la dosis por los síntomas secundarios causados, tales como; visión doble y migrañas. En principio tomaba también Mestinon pero con el tiempo dejo de tomarlo ya sentía que no tenia ningún efecto. Actualmente se encuentra estable pero por supuesto ya al final del día siempre esta presente el cansancio y la fatiga típica de la condición de LEMS. Esta semana comenzó por primera vez su tratamiento con inmunoglobulina, esperamos pueda tener un efecto positivo en su vida.
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Translation from Rafael
Hi all!!! My son is currently 20 years old and was diagnosed 6 years ago. Since then he has taken DAP 3.4. At first it started with a dose of 60 mg and over time it has been decreasing it until today it reaches 30 mg daily. They have been decreasing the dose due to the secondary symptoms caused, such as; double vision and migraines. In principle I also took Mestinon but over time I stopped taking it and felt that it had no effect. He is currently stable but of course at the end of the day the tiredness and fatigue typical of the LEMS condition is always present. This week he started his immunoglobulin treatment for the first time, we hope it can have a positive effect on his life.
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Rafael, sorry you’re son has had to drop dosages due to adverse reactions. I’m very happy to hear he is starting immunoglobulin. It can be a very good treatment for LEMS. For me, it is my most powerful. Good luck, and tell us how it goes!
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