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What was your first treatment plan with LEMS?
When I was first diagnosed with LEMS, my initial treatment was 1 gram of Solumedrol infused over 5 days. It was a very scary experience because it actually caused my LEMS symptoms to worsen, along with all of the side effects that happen with high dose steroids. I found out later that indeed, myasthenia symptoms can worsen on high dose steroids. I was completely unprepared. How about you? What was your first line of treatment?
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8 Replies
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I visited my neurologist in September 2019 when I knew I was heading into another big flare up of my symptoms (extreme fatigue with exertion – felt like I was walking through a bowl of Jello and someone pulling on my ankles when I walked up stairs or hills accompanied by chest pain). He had an idea that it could be LEMS – something he hadn’t considered before. He ordered a VGCC test but in the meantime ordered 5 days of IVIG treatment. The bloodwork results came back after I had the treatment and confirmed LEMS. He has ordered monthly IVIG treatment. He did not recommend any medications but had me visit my hemotologist to rule out cancer. No signs of cancer but my hemotologist recommended following a strict Autoimmune Protocol – what I had already started after research. He also had me stop taking medications that could be contributing to LEMS symptoms. These included low dose asprin (taking post DVTs and PEs) and doxycycline (taking for rosacea).
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Wow Carmen, your neurologist is top notch to be so proactive and to recognize LEMS when he saw it!
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I agree – he is top notch! 🙂 I hadn’t visited him in a couple of years and he hadn’t been able to diagnosis it during my big flare up in 2016 (I wasn’t able to walk or lift my legs. I could only thrust my legs forward using a walker.). He had speculated a lot of other possible diagnosis but didn’t land on one. In hind sight the reason the 2016 was SO bad was that I was placed on a beta blocker due to chest/jaw/back pain with exertion.
When I saw my neurologist this September he joked that he wasn’t any smarter than he was in 2016! Ha! BUT, he had thought of possible disease (LEMS) but it was so rare he didn’t think it could be right. He said when the VGCC results came back possitive he had to research and read the report several times. He couldn’t believe he figured it out! 🙂
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Welcome to the forum! As Dawn said, that’s great news that you have a good doctor!
To answer your question on my first treatment plan, we started with Mestinon (brand name). I immediately found it helpful, but not the end all. The second treatment added was IVIG (immunoglobulin). Big improvement, but again not the end all. Third drug added was Firdapse (amifampridine). Another big boost. I’m not sure this would have been the order had Firdapse been FDA approved at the time. I suspect the order would have been Mestinon, Firdapse, then IVIG. I hope this gives you a glimpse into my LEMS treatment plan. We’re all different, dealing with different accompanying issues. -
Oh Beta Blockers are so bad with LEMS! No wonder you flared so horribly. Speaking of what to watch out for, has your neuro told you to be careful of how much magnesium you get in your diet? Chia seeds are horrible for me, and other dried fruits. I realize quite quickly when I eat something very high in magnesium due to my body’s reaction.
I saw 3 neuros in the years before diagnosis. Fortunately, my 3rd neuro, and current neuro, is my own Dr. House.
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Thank you, Price! I’m curious – what dose of IVIG are you on? Has it needed to be tweaked like Dawn’s was??
Dawn, I am so jealous you have your own Dr. House!!! My neurologist has been great but made no dietary/exercise/lifestyle recommendations. Also did not recommend any medications. He has only recommended IVIG. I did my own research and checked with the hemotologist regarding dietary changes. Some doctors are more responsive to a holistic approach! 😉
Yes, the Beta Blocker was AWFUL! After 2 days I felt like Bambi – my legs were wobbling and I could hardly walk. I went off it at that time but it still impacted my body long after going off of it. It was a couple weeks later when it felt like someone had poured cement into my legs. Even thrusting my hips forward using a walker, a catapillar was faster than me! I used a wheelchair for a couple of weeks then thankfully transitioned back to walker then cane then all symptoms were gone. It was scary and very bizarre! Because of lack of mobility, I developed a DVT after a muscle biopsy followed two days later with multiple pulmonary embolisms in both lungs! My advice to everyone with LEMS is to just list it in your medical records as an allergy so it is flagged!
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Carmen, my dose is 90 grams, given over two days, 45 each day. My infusions take about three and a half hours each. Each infusion starts slow with about 4 steps up in infusion rate. We’re all different, but just as a point of reference, I pre-load Tylenol and Benadryl. Also, because of bouts of nausea, I get an anti nausea med through the IV before we start.
A couple of other things, I consider myself a “pro” at entertaining myself during these long infusions. I bring my iPad, iPhone, and headphones, to go along with the TV in my infusion room. Because I’m a celiac, I also bring GF bars, in addition to plenty of water and an insulated bottle. Pamper yourself! -
Thanks, Price! I’m a Celiac too! It’s nice that they offer snacks…but none are gf. I brought snacks and all my devices too! When I had my initial 5 day blast my husband took the days off and we did a 5 day challenge! We brought different games and tried in those 5 days to play one round of every game we owned (I think we played about 65 games that week!)! It was a lot of fun – minus the day I got hit with the meningitis-like symptoms! This time I’m prepping for a workshop/conference so I felt I needed to work on that. I don’t handle “bored” well so I’m like you! I’d rather have plenty to keep me busy! 🙂
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