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Please Allow Me to Introduce Myself…
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Yes, many of us are on immunoglobulin therapy. Our neuromuscular neurologists are very aware of this therapy, and other therapies too. Make sure you communicate how well, or ineffective your treatment plan is from your perspective. Keep us posted!
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Linda, I thought I posted this last night but apparently it only showed up on the back end, so I am reposting on the front end so you can see it. Sorry about that.
Hi Linda @stooge1960!
First off, I want to thank you for sharing your story with us! I’m really glad that Hayley found this community for you, we are glad to have you!I’m sorry you’ve had quite the battle with LEMS and SCLC. It’s heartbreaking to hear everything you have been through so far. I think most of us have a problem with stairs, so we can understand what that is like and the fear you are feeling and felt.
I also tried Firdapse but was unable to take it four times a day due to my job. It upset my stomach and I was unable to get the break time at work to eat a meal, which was one of the things that helped although I still found I had stomach cramps that were pretty painful. I have not experienced a seizure from it and haven’t heard from many who have, but it is true that it is a known side effect unfortunately. I am wondering what other treatment options you have tried so far? I personally receive an infusion every month made from human plasma (called IVIG) which has turned my life around since my LEMS diagnosis. Has this treatment been mentioned to you before? Most neurologists recommend Firdapse first because it is approved for LEMS, but there are a couple of “off label” options. I know it has definitely been a lifesaver for some, but it’s not the only option out there and it’s not for everyone.
I look forward to hearing more from you and hope we can help you!
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Linda,
Sorry for the double post but I wanted to post my reply from last night as soon as possible since it didn’t go through for some reason.
After reading your discussion with Price, I want to second the recommendation Price offered about IVIG infusions. I also get them monthly and know quite a few other LEMS patients that also receive them. Is your neurologist well versed with LEMS? I know it’s extremely rare, so he/she may not be aware of other treatment options. Do you know if he/she has treated someone with LEMS before? Luckily, my neurologist is an “expert” on LEMS and dysautonomia and I have done a ton of research on my own since my diagnosis four years ago. It can be overwhelming for someone knew, but I want to be sure you are being offered all of the treatments and find what works for you!
Another option is plasmaphresis, which is usually used in “emergency” situations and if you are inpatient in the hospital. It essentially cleans your body of the antibodies it has made, but it a little more involved than IVIG (which is why it’s less commonly used). If you would like, I would be happy to send you some literature on IVIG for LEMS patients that you could share with your neurologist. Another option is to do high dose IV steroids, which can sometimes exacerbate LEMS at first but help in the long run. I had to do high dose steroids last year when there was an IVIG shortage, but found that I got a lot more symptom relief with IVIG.
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