Myasthenia

5 watchers

PeterFay Aug 2020 3:25pm, 16 Aug 2020 9,267 posts	0 PeterFay Anyone else with myasthenia gravis on here? [I was diagnosed with MG 27 years ago, since then am on long term prednisolone and fairly well controlled.] Started running 11 years ago.
Ness Aug 2020 9:39am, 17 Aug 2020 12,278 posts	0 Ness Hi, PeterFay. I don’t have the condition but I taught a student a few years ago who had it. It affected their swallow so much that they had to be fed via a nasogastric tube for a while. They recovered from that though and were doing well when they left the school I was working at.
macca 53 Jan 2022 7:44pm, 26 Jan 2022 29,552 posts	0 macca 53 Myaware.org is worth a look (disclaimer: Mrs macca used to work for them)
Iron_Mum Jan 2022 4:38pm, 29 Jan 2022 5,505 posts	0 Iron_Mum Hi @PeterFay - Ness just pointed me at this, another MG-er here, but like you long term and pretty well controlled, I'm even off prednisolone now as my thymectomy eventually seemed to reduce it to the point where I barely notice it any more, only if I'm really tired. Very much hoping the remission continues indefinitely! Hope you're still keeping well.
PeterFay 11 Jan 9:19pm, 11 Jan 2024 10,193 posts	0 PeterFay Not been running much recently due to back issues unrelated to Myasthenia ...
Northern Exile 12 Jan 8:58am, 12 Jan 2024 10,068 posts	0 Northern Exile Peter, what is your daily intake of prednisolone? I'm guessing you follow the same kind of protocol as PMR sufferers and keep it to a minimum.
PeterFay 13 Jan 6:10pm, 13 Jan 2024 10,194 posts	0 PeterFay Currently stable on 10mg alternate days although have been on as high as 60mg alternate days over the last 30 years.
Northern Exile 13 Jan 9:48pm, 13 Jan 2024 10,071 posts	0 Northern Exile Ok, understand. 10mg is above the baseline adrenal threshold, just wondering why you don't take 5mg daily. Do you get any side effects?