MG Ask Me Anything
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Thymus gland question
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Thymus gland question
Let me begin with a brief history. I’m 72, and was diagnosed with Ocular MG in 2018, which has since progressed to gMG about one year ago (weak neck and shoulder muscles, eyelid closure, trouble chewing). I’m up to 120mg X 4/daily Mestinon and 15 mg prednisone. First two cycles of Vyvgart relieved my symptoms, but now it’s less effective with each cycle administered. And now for the thymus question: Back in 1954, I was a “ thymus-irradiated baby” in Cuba. I had a negative CT Chest back in 2018, but false-positives and negative do occur. When I bring this up with my MD, he’s not very impressed. Wouldn’t it be something if my thymus was the culprit all along. I’d love to hear anything from anybody with a similar experience or even a healthcare professional’s opinion.
JR
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3 Replies
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Im 71 and have been on IVig for 2years now for gMG and its effectiveness began wearing down from every 21 days to 14 days and now Im on SCig every 7 days with Hizentra which basically doubles my dosage and so far so good, my thymus as I was told at my age would be a big ball of mush and doctors believe it won’t help removing it unless your very young and has proven results. There are other drugs to help you manage the disease you just have to keep trying and hopefully your doctor will work with you….
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I’m age 71yr old male and was diagnosed with MG in Feb 2023. I’ve been on Vyvgart, four weeks on with a four week break since the beginning. I’m also taking pryridiostigmine 60mg 4x daily, but have recently stopped taking it at bedtime to see if it helps reduce nightime leg cramps. In early 2024 my neurologist discussed the option of me having a thymectomy. Even though the Thymus gland no longer functions as we get older, he said having the remaining tissue removed could benefit me 1+ years after the surgery, possibly reducing the number of infusion cycles per year. I agreed to have robotic assisted surgery. The thoracic surgeon gave me a 90% success rate on having the surgery. While the surgery successfully removed the thymus tissue, my right phrenic nerve was damaged during the procedure which resulted in paralyzing my right diaphragm. The damage is irreversible. The result is profound shortness of breath because my right diaphragm doesn’t pull air into my right lung. I’m now living with MG and this additional breathing complication. In hindsight, I would have been better off without having the thymectomy. While my physical stamina has been greatly reduced, my faith is strong as ever. I live my life one day at a time and leave the rest in God’s hands.
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Eat bana’s for cramps!
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