Hi, I only know it's best to remove the thymus as soon as possible, to have the best effect.
But how about over 6 years after you're diagnosed? Can it still help, or won't it make any difference?

It's for my friend: she is young and has a normal thymus gland. She is diagnosed in 2008, and had her first symptoms in 2007. She has been on prednisone and mestinon since 2008, nothing else.
She's afraid she missed her chance at less symptomes because she never had the recommended operation in her first years.

I'm so sorry—I didn't see your post!

There's no way to know if a thymectomy will help or not. Since many of the thymectomy patients that they do studies on are on immunosuppressants, it's not easy to tell what it was that put them into remission.

It's such a personal choice. And it really is a crap shoot as to whether it will help or not.

Is she doing okay on the meds she's on?

Surgery also has risks, such as ticking the immune system off even more. Some studies show that you can get another AI after body stresses such as surgery, infection, pregnancy/birth, etc.

I wish there were better studies on thymectomy. I read some of the initial ones that were done ions ago and the statistics are basically the same as they are now.

Whatever she decides, I hope it goes well for her.


Annie

I had my thymectomy 5 years after diagnosis. I was put on Cellcept right after diagnosis and it seemed to control it along with mestinon for about 5 years. After an emotional crisis (dad died after long illness and I was his only child in the area) 5 years after diagnosis, I had my first mg crisis and started IVIG along with meds. Continued to get worse with mg and decided I wanted a thymectomy. I had been told when I was first diagnosed I was too old (50) and it wouldn't do me any good. When I had surgery at 55, I had educated myself and realized that 50 (or 55) is not too old. The surgery seemed to help for about another 5 years when I started a downward slide again. But that's another story - my point is that each person is unique and I don't think there is only one way to treat a person with mg. If she is having issues and her current treatment is not helping her enough, a thymectomy might be a possibility. She needs to discuss with her neuro and family.

Good luck with her decision.

Thanks both!

I was always told there's this "5 year rule": do it as soon as possible, up to 5y after diagnosis.

She does have some weakness, but is able to cope. She does however starts to notice her long use of prednisone. She's on 25 mg a day for years now, can't be healthy.

You are right; there's no way to tell if the ones who got a thymectomy would gotten better without it.

Thanks Juanitad for sharing your experience; it gives her hope and helps in her decision making.