Ashley
Forum Replies Created
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Hi there!
First, I am so sorry you are going through this!
Unfortunately, I cannot tell you whether those symptoms were a seizure or something else.
I know you went to the ER, but have you had a discussion with your neurologist/LEMS specialist about this?
I would say it’s likely that you may not be able to continue with Firdapse as it isn’t worth the risk, even though you received a lot of benefit from it. With that being said, it is really up to you and your neurologist to decide together.
Have you tried any other treatments for LEMS yet? There are many other options like IVIG, mestinon, Rituxan, and cellcept.
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Hi @Raine ! Welcome! We are glad you found us!
Some other immunosuppressants that can help with LEMS include Cellcept (mycophenolate mofetil) and Rituxan infusions (Rituximab)! We have several users here that use either, Azathioprine isn’t prescribed much anymore in the US.
https://lamberteatonnews.com/approved-treatments-for-lems/
Has a lot of info about Cellcept and Rituxan along with other treatment options! A lot of us also receive IVIG infusions to treat LEMS!
We also have some forum topics you can browse on the different treatments! https://lamberteatonnews.com/forums/forums/forum/treating-lems
Hope this helps!
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@Deborah Carpenter Sorry for the miscommunication! Our next meeting is June 20th at 5:30
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@Chantal I do! I was also diagnosed by Dr. Chemali before he left!
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Hey @Wanda Grischkowsky I don’t know much about lab values associated with statins but it could be plausible! I would definitely bring it up to whomever prescribes it for you.
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@Tom sharpe
High humidity is the absolute worst! I’m sorry you ended up moving back to MA permanently.
I also love cruising and find that the weather in the Caribbean is mild enough to enjoy in the late fall/winter. I believe we should all have a yearly getaway!
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Hey @Jamie L Sanderson
I agree the heat is also exhausting, and my skin also feels like I’m on fire when I overheat. I also turn extremely red and blotchy which I hate even more.
Like you, I also don’t enjoy the winter. I live for the days when the weather is between 60-80 which are few and far between sadly.
I’m so sorry you struggle with the weather as well. It can be very isolating and makes Lambert-Eaton even harder to cope with. You are not alone!
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I’m also not looking forward to the extra hot days but I really enjoy being outside when its in the 60’s to low 80’s!
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@Ginny.Boynton Thanks for sharing! 🙂
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Hey @Kristin !
I’m so sorry that your daughter is going through this as well!
It is so disheartening that Nienke is unable to use Firdapse at this time!! Hopefully you are able to receive approval soon from your insurance company! Firdapse is a game changer for so many of us!
I am happy to hear that Nienke is no longer hospitalized although I’m sure that was quite the ordeal and so stressful for both of you! @Lori Dunham is so awesome and we love having her for insight about LEMS in children. I think Grace may be the only child I know of with LEMS, but maybe @Lori Dunham knows of other children or parents to connect with.
Either way, we are so happy you found us and that we could offer you some hope! Things will get better! Sometimes IVIG can take a few months to feel the full effects so hopefully things will continue to improve for Nienke!
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Hey @deyaxsun
Like you, I also have ADHD! I’ve found that my ADHD has gotten worse with age.😂
I haven’t tried medical cannabis personally, but I hope to be able to try it in the future.
I am currently breastfeeding and very wary about anything new. I’ve even stopped Firdapse. It’s really neat that they have a clinic in the UK to help!
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I definitely have the extra fatigue post infusion as well, and sometimes I feel a delayed reaction about a week after too. Limiting screen time is a great idea, I find that helps me too along with a warm bath if I can make it to the tub!
What mild sleep aid works for you?
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@deyaxsun I also enjoy short walks! I think the fresh air makes a huge difference sometimes!
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Hey @deyaxsun !
I’m glad that you can rely on the main doctor to keep everything in check! I agree it definitely helps if the specialists can talk with each other instead of relying on us to be the messenger, it would be so much easier that way!
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@Julie No problem! I’m sorry I couldn’t help you more!
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@Ginny.Boynton Wow! Thank you for the information! I wonder if we are able to access it as well somehow!
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@Julie I agree it’s a tricky situation!
When I had my miscarriage in 2023, Catalyst was notified as I stopped taking the medication. I had also agreed to join the pregnancy registry and had to notify them that I would no longer be able to. Luckily, my second pregnancy and delivery went without issues and I have a healthy, happy beautiful boy!
I hope your appointment at Mayo goes well and you get the answers you are looking for!
Thank you so much for your kind words and well wishes! I wish you the best as well and will be following up to hear how your appointment went!
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Thank you @jennifer-jeanne-kim and @Price Wooldridge for your insights!!
I had several things that changed my infusion routine and I think that is a big part of it. It also doesn’t help that I have a three month old! LOL 😂
Sadly, I am unable to take benadryl because it affects breastfeeding (dries up your supply) and they restarted me on the solumedrol which also keeps me up. I think I am going to skip the solumedrol this week and see if that helps at all. I really miss my benadryl naps!!
@Price Wooldridge In the past warm teas with honey have helped me as well!
@jennifer-jeanne-kim The hormones could definitely be playing a role, postpartum has been quite a swing to navigate! Thank you so much for sharing all of your tips! It certainly helps to know we are not alone! ❤
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Hey @Julie it looks like @Anngail Norris posted this reply back in 2021, I’m not sure if she’s still able to receive Ruzurgi.
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I’m so sorry you are having such a hard time with the Firdapse! I was not able to try the 3,4 DAP unfortunately, so I am unable to speak to the effectiveness of it. I have heard many LEMS patients experiencing what you and @Ginny.Boynton are reporting.
I agree its disappointing that we are unable to choose. Sadly, I feel there is nothing we can do aside from waiting it out. The orphan drug act gives exclusivity to Catalyst. I hate to get wrapped up in all of the politics of the two because frankly it stresses me out. Currently I am not taking Firdapse because I am breastfeeding and without studies I’m not willing to take the risk of it affecting my child. I took firdapse with my first pregnancy and unfortunately had a miscarriage at 10 weeks (we aren’t sure why).
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Hey @Tom sharpe
I’m so sorry IVIG wasn’t effective for you! It’s interesting how people with LEMS have such varied responses to treatments.
I will have to give the Theraworx a try! Thank you for sharing with us! 🙂
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@Geost I’m sorry they still couldn’t diagnose you! I am glad that the steroid helped! @Wanda Grischkowsky said she had similar symptoms and they diagnosed her with gastroparesis (which is basically slow stomach emptying/digestion). I know that is something commonly associated with LEMS!
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Hey @Wanda Grischkowsky Does the domperidone have any side effects that you’ve noticed? I was planning to ask my doctor about starting it because it also increases breast milk production apparently!
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Hey @Wanda Grischkowsky It’s nice to know I’m not alone, however I am sorry you struggle in the winter as well. My husband and I have started doing a puzzle here and there before my son was born in December! I am loving this warmer weather and hope it sticks around for a while! I’m ready for summer!