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Forum Replies Created
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@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.
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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. -
And I’ve not heard anything yet about a timeline for approval. I’ll check with Catalyst.
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This is so interesting that we seem to be predisposed to so many different autoimmune disorders. SID is one I hadn’t heard about with any connection to LEMS and autoimmune.
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That’s one I’ve never heard of before. I feel the same way with my DH, except I did get that diagnosis first. Thanks.
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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!
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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.
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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.
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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.
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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.
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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.
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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.
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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! -
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? -
Interesting. What other testing and evaluations led to your diagnosis?
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Were you always seronegative, or just tested so after getting on your treatment regimine?
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I didn’t realize you are an OT. We’d love to hear how you use that knowledge to best adapt your daily life with LEMS. We should do a Zoom call on that and make it the big topic. Perhaps in May for our monthly call? Let me know. We can promote it here and on social. Let me know!
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As an airline pilot I know it must be important to keep a cool head and make quick, reasoned decisions and judgments. I guess this is telling how important your Firdapse is every day.
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Yes many of us use Mestinon with success, though often it is not enough.
We don’t have much yet on the Argenx effort yet, but hope to get more details soon. They manufacture a MG drug, Vyvgart. -
Ah okay! For LEMS the usuals are Mestinon, Firdapse, IVIG. Often, if those don’t work, not indicated due to other issues, or not tolerated, I hear of good results with Cellcept and Rituxan (immunosuppressants). And of course there are steroids which are great at reducing inflammation, but come with their own problems if used long term. Argenx is currently in preclinical studies for another drug that works above the antibody level, but it is not close as of yet. Stay with it and work with your neurologist! Keep us posted.
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I totally agree, once you have the diagnosis on solid testing results, it should be good. And with autoimmune, they often do have others follow. In my case two. But I know other patients who have several more, all going along with LEMS and autoimmune.
I’m sure you and your team will remain watchful. -
Okay, well good luck in your diagnostic journey and continue to press for a solid diagnosis. Neuromuscular disorders are difficult to diagnose, often showing similar symptoms. The VGCC blood test is a good one for a differential diagnosis, but so too is the single fiber EMG. If it turns up positive for muscle facilitation, that could make your diagnosis clearer.
Keep us posted! -
Hey Bernie, just checking in. I remember you report moderate day to day changes in your LEMS symptoms, as do I. Can you refresh me on your treatment plan?
I’m on Mestinon, Firdapse, and IVIG.
I seem to recall you are not on Firdapse or IVIG, but not sure.
Let me know! -
I’m interested in your testing. I recently got a new neurologist who wanted to retest antibodies. My original Mayo Clinic Lab results at my diagnosis were Positive for PQ. On my retest they were negative, though this was done at Quest Diagnostics who do not report numbers, only Positive/Negative. I made sure my neurologist got a copy of my original test results. He did not seem to question my diagnosis.
Anything further on your testing?