Lambert-Eaton News Forums Forums Treating LEMS Firdapse and Ruzurgi (Amifampridine) Would you switch to taking 100 mg daily of Firdapse?

  • Would you switch to taking 100 mg daily of Firdapse?

    Posted by price-wooldridge on April 25, 2023 at 7:00 am

    Part of going on Lambert-Eaton Myasthenic Syndrome’s only FDA-approved medication, Firdapse (amifampridine), is titrating up to an appropriate dose for you and your LEMS.

    You and your neurologist may decide to start with a low dose and judge its effectiveness on your symptoms and any side effects that might appear. Then, you both may choose to titrate that dosage until you find it effective against your symptoms. At present, the maximum recommended total daily dosage is 80 mg. I am currently on 60 mg total for one day. Where are you?

    I recently spoke with Dr. Gary Ingenito, Chief Medical and Regulatory Officer for Catalyst Pharmaceuticals. He told me they are currently trying to get approval to raise that maximum suggested dosage to 100 mg a day.

    Read a brief article on this effort, HERE.

    If you were given the opportunity to raise your maximum daily dosage up to 100 mg, would you want to?

    Or are you happy where you are?

    wanda-grischkowsky replied 11 months, 1 week ago 9 Members · 21 Replies
  • 21 Replies
  • amber

    Member
    April 25, 2023 at 2:19 pm

    I am already on 100 since I was on 100 with ruzurgi. I need to go to up 120 but no success so far.

    • price-wooldridge

      Member
      April 28, 2023 at 8:28 am

      I’m not sure where you are, but Catalyst Pharmaceuticals here in the US is only seeking to move the maximum daily intake of 100 mg.
      Are you on any other treatments which could help?

  • tracy

    Member
    April 25, 2023 at 2:43 pm

    It would be to my benefit to go to 100.

  • edward-smith

    Member
    April 25, 2023 at 4:31 pm

    i would love to be on Firdapse

    i was on 3/4 dap for long time maybe 12 years

    i have been put on Firdapse temp as there was no supply of 3.4 dap !

    my goverment wont pay for Firdapse as it is £20 per tab

    i live in scotland but if i stayed in england i would get it perm

    postcode lottery !!

    Firdapse is a much better drug than dap 3/4 for me

    • price-wooldridge

      Member
      April 28, 2023 at 8:31 am

      Interesting that Firdapse works better for you than formulated 3, 4 Dap. I’ve heard efficiency on both sides. We are all so different, and need different treatments.
      I’m not totally familiar with distribution in Europe, but do knoe it is different.
      Hoping for the best for you!

  • dcarpenter

    Member
    April 25, 2023 at 4:36 pm

    Thanks for this information. I would be hesitant because of potential seizures side effects.

    I’m on 60 mg day and seems to be enough to control symptoms for me now.

    However it is reassuring to know that there is some room to increase my dose if my disease worsens

    Deborah

    • price-wooldridge

      Member
      April 28, 2023 at 8:34 am

      I’m in about the same place as you with Firdapse, and also on Mestinon and IVIG. I can’t recall your full treatment plan.

  • Alan Stone

    Member
    April 28, 2023 at 1:15 pm

    I am on 60 mgs/day, (Firdapse) only because my neuro thinks I’d be flirting with seizures to go higher. Personally, I’d like to think I could go to 80 mgs, (or 100 mgs) when evening activities might require a degree of muscle coordination.

  • price-wooldridge

    Member
    April 30, 2023 at 4:35 pm

    @alan-stone Interesting you’re on the same daily total as me. I’ve certainly thought about how would it would be to step up to 80 mg. Most days for me are fine at 60, but there are days more would be better. Perhaps it’s a discussion with my neuro next visit.

    I have no history of seizures so I wouldn’t expect a problem at higher dose, but understand if you might hesitate if their was an increased risk.

  • grace-easley

    Member
    May 1, 2023 at 8:23 am

    Yes I would definitely be interested in taking 100 mg of Firdapse daily.  I am currently on 70 mg which helps , but more would be better.

    • price-wooldridge

      Member
      May 1, 2023 at 12:55 pm

      And you could certainly ask your neurologist to bump you to 80 mg if he/she were in agreement. I’ve not heard the possible timing for FDA approval to 100 mg yet.

    • price-wooldridge

      Member
      May 1, 2023 at 12:55 pm

      And you could certainly ask your neurologist to bump you to 80 mg if he/she were in agreement. I’ve not heard the possible timing for FDA approval to 100 mg yet.

    • price-wooldridge

      Member
      May 1, 2023 at 12:55 pm

      And you could certainly ask your neurologist to bump you to 80 mg if he/she were in agreement. I’ve not heard the possible timing for FDA approval to 100 mg yet.

    • price-wooldridge

      Member
      May 1, 2023 at 12:55 pm

      And you could certainly ask your neurologist to bump you to 80 mg if he/she were in agreement. I’ve not heard the possible timing for FDA approval to 100 mg yet.

    • price-wooldridge

      Member
      May 1, 2023 at 12:55 pm

      And you could certainly ask your neurologist to bump you to 80 mg if he/she were in agreement. I’ve not heard the possible timing for FDA approval to 100 mg yet.

  • dorothy-dempsey

    Member
    May 2, 2023 at 2:34 pm

    I have been on 80 mg/day for several years but would be hesitant to go higher.

  • dorothy-dempsey

    Member
    May 4, 2023 at 9:46 am

    To answer your question Price, I would hesitate to go to 100 mg/day Because of my age, I will be 83 this year, and because of my weight, I have a hard time maintaining 110 lbs.  I take my 80 mg every 2 hrs. from 6 A.M until 8 P.M as having to wake through the night to take them would be very disruptive to my sleep which is critical for my overall health.  I had one neuro. who suggested that if I felt I needed, I could take them every hour and a half occ.  I have done that on occasion without difficulty and just recently I accidently took 2 within 20 mins of each other with no adverse side effects but I don’t know if I would be comfortable taking more than 80 mg/day just because of my fear of possible seizure activity.  I guess primarily because of my age and how I have reacted poorly to so many other drugs I have tried to take.

     

     

    • price-wooldridge

      Member
      May 5, 2023 at 9:28 am

      Thanks for the explanation, Dorothy. I think your response highlights how each individual has their own, unique criteria for making decisions regarding their medications and their healthcare. And as you mentioned, in some cases, age is definitely a consideration. Thanks for your response!

  • bernie

    Member
    May 5, 2023 at 3:24 pm

    I have titrated up to 90mg/day.  I take 15mg every four hours, including overnight. I was able to work with my neurologist to obtain the 90mg/day.  He is hesitant to increase it further because of the gu8idelines regarding stroke but he might be willing to increase my dosage if the recommendation is increased.  I am not sure if it would help me or not to take more but I would be willing to try it.  My symptoms are not what I would call controlled, I still have lots of neuropathy and weakness.  Other symptoms have decreased, like lack of saliva and other autonomic issues, but I attribute those to the Rituxan infusions I get every four months.

    I lobby for an extended release version of Firdapse, like I have for Mestinon.  Every time I speak with Catalyst I request it and get told that they are not looking at it right now. I know the ER Mestinon makes a big difference for me.

    • price-wooldridge

      Member
      May 9, 2023 at 9:42 am

      Interesting that you have been able to go up to 90 mg. I know of a few who have been able to get to 100. I’m checking with Catalyst for a timeline for FDA approval to go to 100 mg a day.
      Oh, and I spoke with them about time release Firdapse and was told they invested a lot of money in trying to develop it, but the technical challenges were too difficult to make it work as planned effectively. That project has been tabled.

  • arlette-ovady

    Member
    May 9, 2023 at 7:54 am

    Yes, I am currently taking 80mg per day without issue and would love to trial 100mg per day. I feel it would be beneficial!

    • price-wooldridge

      Member
      May 9, 2023 at 9:38 am

      And I’ve not heard anything yet about a timeline for approval. I’ll check with Catalyst.

  • wanda-grischkowsky

    Member
    May 9, 2023 at 6:45 pm

    I currently take 60 to 70mg per day and feel it isn’t enough sometimes. I am unsure if I would increase to 100mg.

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