221/365 – Updates on myasthenia vaccine and overnight mestinon

You may remember that I wrote about a vaccine that is being trialled in Belgium a few weeks ago, myasterix. This was high up on the list of questions for my consultant earlier in the week. He hadn’t heard about it but said he would do some research before my next appointment. 

When discussing it, he said that vaccines for auto immune conditions haven’t been particularly successful and, while looking at the website, the fact that it has been successful on dogs and rats doesn’t mean it will work on humans. I assume his scepticism is an attempt to stop me getting my hopes up, but I’ll keep an eye on the myasterix website anyway.

Overnight mestinon

When describing the way I’ve been feeling since my last appointment, I mentioned the possibility of trying overnight mestinon – which has been recommended by a few of you. Unfortunately, this was knocked back. 

Apparently, he was unsure whether we are able to get it in the UK, said I didn’t need it and that there is a slight risk of overdosing with it. When pushed for more information on the last point, he changed his mind saying it’s pretty safe. 

I know that it is available, having spoken to at least one person who has had it prescribed, but right now I’m not sure that I do need it so didn’t push any further. All in all, a bit frustrating. 

2 thoughts on “221/365 – Updates on myasthenia vaccine and overnight mestinon”

  1. I use to use it before my new insurance stopped covering it and I liked it the timespan was great. I enjoyed not waking up in the night to take my normal mestinon. I never heard of the overdose issue as it only really last about 6-8 hours unless you are not getting that much sleep and taking a regular pill before that time is up. Considering that I am still on pretty high doses of the drug I would say no risks there, lol. Back then I took four 60mg of mestinon every 4 hours and an hour before bed my about 8pm 180mg (timespan) mestinon.
    As for the vaccine I was told to keep an eye on the nih.gov sites for us in the states and whatever gov’t sites you have there for the latest news as some doctors are not always on the up and up. We apparently are more anxious than they are as they have more disorders and medicals issues to be concerned about than MG.

  2. Hi, I’m the one who wrote you the first time about the vaccine, the cure for myasthenia and some other autoimmune disorders are already proved on humans being his creator Stephane Huberty, which also suffered from myasthenia for 14 years, the first successful case, there’s an article on the WSJ about him but is a little off about the reasons why the vaccine has not seen the light, but we know that if there was a cure on the market for any autoimmune disease that would mean millions of dollars less in the pharmaceuticals pockets, here’s the article I hope you can take a look.


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