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Ginny Boynton

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  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Weaker on Firdapse in the forum General Questions and Topics 1 week, 5 days ago

    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.

  • Profile picture of Ginny Boynton

    Ginny Boynton started the topic Weaker on Firdapse in the forum General Questions and Topics 2 weeks ago

    Since I switched to Firdapse, I have been getting weaker and weaker. I was on 90 mg of Ruzurgi, and when I switched to Firdpase, I took the maximum amount of 80 mg. I was then permitted to go up to 90 mg. but I continued to get weaker. Then I had a seizure so I had to go back down to 80 mg. Not only am I having to use a lower amount of Firdapse…[Read more]

  • Profile picture of Ginny Boynton

    Ginny Boynton started the topic Getting weaker and weaker on Firdapse in the forum Using Our Forums 2 weeks, 1 day ago

    Since I switched to Firdapse, I have been getting weaker and weaker. I was on 90 mg of Ruzurgi, and when I switched to Firdpase, I took the maximum amount of 80 mg. I was then permitted to go up to 90 mg. but I continued to get weaker. Then I had a seizure so I had to go back down to 80 mg. Not only am I having to use a lower amount of Firdapse…[Read more]

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    Ginny Boynton replied to the topic FIRDAPSE side effects: Does everyone experience them? in the forum Amifampridine (Firdapse and Ruzurgi) 4 months, 2 weeks ago

    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.

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic FIRDAPSE side effects: Does everyone experience them? in the forum Amifampridine (Firdapse and Ruzurgi) 4 months, 2 weeks ago

    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.

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic FIRDAPSE side effects: Does everyone experience them? in the forum Amifampridine (Firdapse and Ruzurgi) 4 months, 2 weeks ago

    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.

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic What Can I expect in the forum Using Our Forums 5 months, 1 week ago

    You’re welcome Debbie.

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic What Can I expect in the forum Using Our Forums 5 months, 1 week ago

    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]

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Update from my Neuro! in the forum Amifampridine (Firdapse and Ruzurgi) 7 months, 4 weeks ago

    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.

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Traveling with LEMS in the forum General Questions and Topics 8 months, 1 week ago

    Ashley,

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

    Ginny Boynton

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Catalyst To Continue Ruzurgi in the forum Amifampridine (Firdapse and Ruzurgi) 9 months ago

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

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Catalyst To Continue Ruzurgi in the forum Amifampridine (Firdapse and Ruzurgi) 9 months ago

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

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Catalyst To Continue Ruzurgi in the forum Amifampridine (Firdapse and Ruzurgi) 9 months ago

    Price,

    Do you have an email address for Ken Ecker?

    Ginny

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Catalyst To Continue Ruzurgi in the forum Amifampridine (Firdapse and Ruzurgi) 9 months ago

    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.

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic August Zoom Meeting reminder! in the forum LEMS Community Zoom Socials 9 months, 2 weeks ago

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

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic Blood pressure medication in the forum General Questions and Topics 1 year, 4 months ago

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

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

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic What year where you diagnosed with LEMS? in the forum General Questions and Topics 1 year, 7 months ago

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

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic The Efficacy of Firdapse, 3,4-diaminopyridine or 3,4-DAP, In Treating LEMS in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 7 months ago

    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]

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic The Efficacy of Firdapse, 3,4-diaminopyridine or 3,4-DAP, In Treating LEMS in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 7 months ago

    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]

  • Profile picture of Ginny Boynton

    Ginny Boynton replied to the topic The Efficacy of Firdapse, 3,4-diaminopyridine or 3,4-DAP, In Treating LEMS in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 7 months ago

    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]

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