Ginny Boynton
Forum Replies Created
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Hi Heather,
I’m sorry you’re dealing with so much. Do you have anyone to vet the suggestions for where to go post hospital? Sometimes the only places open aren’t the best, but it’s good to get a look at all of the options and ratings for near where you live. From your comment about having private insurance, are you aware that a stay in a rehab facility won’t be covered? I would expect it to be if the doctor prescribes it?
Ginny Boynton
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I’m sorry you weren’t able to try Ruzurgi. Some people seem to do better on Firdapse and some on Ruzurgi. It would be preferable if we could each try both and decide which does a more effective job for us.
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And I forgot to check the box which would alert me to replies so I’m writing another post.
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My treatment has changed from taking Ruzurgi to Firdpase, and it has been much less effective more me. I was able to walk on the Great Wall and Macchu Picchu with hiking sticks on Ruzurgi and now I’m having to use my walker to get around my bathroom while taking Firdapse.
Initially Catalyst indicated it was going to make Ruzurgi for those of us who do better on it, but recently it has given me the impression that it is not planning on doing that, and I’m extremely depressed with what the change is doing to my life and the lives of my family members and friends.
This is so unnecessary when a drug exists which helps some patients more. Is anyone else having this issue? Does anyone understand why Catalyst is refusing to help patients who do better on Ruzurgi?
Firdapse has a half life of 1.5 – 2.5 hours, and Ruzurgi’s is 3.5 – 4.5, With that factor as well as the addition of phosphate salt to Firdapse it seems obvious that the two drugs would not react the same.
I would appreciate any insight into whether Catalyst is going to help us by making Ruzurgi or whether there is something we can do to convince them of the need for it if they truly want to be called “patient centric”?
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The medicare provisions in the Inflation Reduction Act are critical. With them, in 2025, Medicare patients will only have to pay $2000 out of pocket for the entire year, Insulin is capped at $35/month and medicare will be able to begin negotiating the price of pharmaceuticals. Unfortunately, Firdapse won’t be on the list… at least not any time soon, but last year 90 mg of Firdapse cost $680,000 and this year it costs $750,000. That price change alone shows how important negotiation is. Many of those who are concerned with cutback in rare drug research are crying Chicken Little.
The freezing of research into rare disease treatment by the Debt Ceiling Bill is problematic, but because the Republicans wouldn’t pass a clean debt ceiling bill there was no choice but to go forward with it the way it was decided. Unfortunately the Republicans are now trying to renege on the agreement which was made and take funding levels back even further.
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Thank you Price.
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I have an enormous roadblock in my LEMS treatment. When I was on Ruzurgi, I didn’t need to use a walker or scooter, and used hiking sticks to walk on the Great Wall and Macchu Picchu. Now that I’m taking Firdapse, I’m having to use my walker just to get around my bathroom. This decrease in mobility has been very difficult physically as well as mentally since I know the treatment exists, but I can’t get it in our country.
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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.
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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.
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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.
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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 Washington, Seattle, who you can reach out to. https://www.uwmedicine.org/bios/michael-weiss#about-tab
Ginny Boynton
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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.
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Ashley,
Will you arrange wheelchair transport at the airports? That’s a good way to conserve your strength.
Ginny Boynton
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Price,
Do you have an email address for Ken Ecker?
Ginny
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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.
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Looking forward to attending the zoom meeting on the 30th.
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Here is a specific case regarding blood pressure medication being problematic.
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I was diagnosed in 2001 after just a few months of noticeable weakness.
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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.
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You’re welcome Debbie.
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Thank you Price. I can probably fashion it off of Pat McEnany’s email address.
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Thank you Price. I’m really struggling with Firdapse so this is good news.
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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 first but didn’t proceed to FDA approval.
Who should I reach out to at Catalyst to help them understand the problems with efficacy that many LEMS patients have?
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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 hear that Catalyst told Price it wasn’t currently working on a medication that would mimic Ruzurgi and have no phosphate salt.