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Sharing experiences of transitioning from Ruzurgi to Firdapse
Good evening all!
As most of you are aware, many are currently transitioning from the medication Ruzurgi to Firdapse. I want to provide a thread for you all to share your experiences here.
This is a safe space for all, but I do ask that we try to keep the comments about the ongoing lawsuit to a minimum. I ask that we focus solely on the transition process!
In her most recent column, @lorildunham writes about her daughter, Grace’s, experience with transitioning to Firdapse. Currently Firdapse is approved by the FDA for adults with LEMS, and they are still working on FDA approval for children, although they have an expanded access program for children with LEMS.
Luckily, Grace has had a smooth transition, it seems.
How many of you are currently transitioning to Firdapse? Or maybe have already done so?
If you’re in either boat, I would love to hear how your experience was!
I know this is a difficult time for many, but know that @pricewool and I are here for you, and Catalyst pharmaceuticals is also here to help you navigate!
Catalyst has many resources available to make it a safe and smooth transition!
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10 Replies
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hello from British Columbia, Canada
I had to transition from ruzugi to firdapse last fall due to the law suit in canada. I actually found firdapse was more effective for me. I am trying to take as little as possible due to the cost but it helps me a great deal.
I am trying celcept right now to hopefully take Firdapse’s place.
Does anyone have experience with that drug? -
Hey @joanneevans
Thanks for responding and sharing your experience with us!!
Keep us updated on your experience with Cellcept! If you’d like, I’d be happy to post a topic to the group this week about experiences with it. I think we have a couple of members who have taken or are taking.
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This will be my Second Time going this route because of course the 2 companies can’t get long and leave us 2 choices of medicine… (legal money grab stuff we all know)
For ME
Firdapse is only 30% effective, I can not walk as far, I have to go back to using my wheel chair more, I can not stand as long and need more help the I did on Ruzurgi.Why because the 2 chemicals are totally different blends..
for MY body the 3,4-Diaminopyridine (Ruzurgi) just works 70% better
the Firdapse amifampridine does me barely any good, BUT? we have no choice now and bottom line is we have to just DEAL with it..
That is my personal experience
I am also on a very good Keto diet with no sugar or garbage in y body I am sure that helps out some -
Hi @davew41
I’m sorry you haven’t had the smoothest transition. Do you take mestinon as well? Do you receive any other LEMS treatments?
I’d rather not go into the politics of pharma companies, I’m just here to help as much as I can. Everyone has a different experience, personally I’ve received quite a bit of help from Catalyst.
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Yes I am on Mestinon as well just as I have been since 2013
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@davew41
Hey! I would suggest talking to your neurologist about IVIG or Rituxan if firdapse isn’t enough for you. Most of us are on one of those therapies as well as oral medication!
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I am also in the process of transitioning from Ruzurgi to Firdapse. I have been taking Ruzurgi for 2 years. I am not a big fan of change. (Who is?) but I must say that the staff at Anovorx has been extremely helpful and reassuring. They contacted Medicare and my supplemental insurance. I have a grant to cover the co-pay and they dealt with that also. So from a staffing and assistance standpoint I have been very satisfied.
I have not started taking Firdapse yet since I still have Ruzurgi left. When I first started taking Ruzurgi, I also had Rituxan infusions, which added to the treatment.  I  have Lymphoma in addition to LEMS, so my risk of SCLC comes into play. I will be considering a round of Rituxan before I start Firdapse.  I’m a little anxious about changing meds, but in this case there isn’t a choice. As “they” say, it is what it is.-
@anngailn Anngail, as I mentioned to someone else in the forums, it’s difficult when we have so many medical issues stacked on top of each other. We are all so unique, and no one plan works for everyone. As you said, change is difficult, but it’s best roll with it when a person has no influence or control of the change. It’s certainly better for our mental health. Good luck on your transition.
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I have done the transition. Unfortunately, my other medical issues have clouded my observations of the effects. At the same time, I had some AFIB episodes and was put onto Diltiazem, which most certainly affected my Mestinon/Firdapse. I was wrecked. I called them back and asked for something else and was prescribed Metoprolol. It seems to be less intrusive to my LEMS drugs, but I am unsure as to how much that is due to the change in AFIB or Ruzurgi->Firdapse. I may need to do some experimentation and see if I can replicate where I was before all of the changes.
I do find that the Firdapse has fewer side effects than the Rugurzi; tingling lips, tingles in hands, shakiness which goes away within an hour.
The process was well performed by both Anovo and Panther. I was low when it was decided to make the switch. I was able to achieve the switch without a gap or any real drama.
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@bernie Bernie I know what you mean when our medical conditions are piled one on top of the other. It gets complicated and difficult to assess. I’m glad you were able to make the transition without difficulty. I hope you find good plan adjustments to get you back where you want to be. We just need to be proactive and not settle.
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