Samantha,

I will leave the answers to your questions to the others who have more knowledge and experience with the specifics. But I do have a few question.

Did your CT Scan reveal a problem with the thymus? Was there a thymoma. What was the reason your doctors ordered the thymectomy? The MG Manual states that patients "with a thymoma do not respond to thytmectmy as well as those without thymoma, but other have reprobate good response after removal of tumor along with the thymus." (page 18)

How well did you handle the Prednisone? I been on a high dose for three weeks at the 60 mg per day, or 1.8mg/kg/day level. I have had remarkable results, although I do know that the positive results may diminish, as my neurologist starts gradually tapering the dose down to maintenance levels.

I have always tolerated drugs well. I attribute this to the extensive field experimentation I conducted during the 1970s.

-Mark-

I have read that thymectomy can be curative even in the absence of a tumor, especially in young people. It can, however, take a couple of years to work. I think that it takes that long for all the defective immune cells to die off.

It sucks to be so young and have this stuff. I am 56 years old and it sucks. It sucks worse if you are young. Your chances of improving from your surgery are much better than mine would be if I had the same surgery.

This is a good place to learn stuff and to talk.

Well I didn't have a tumor, but I did have an extra growth of tissue and it was slightly enlarged according to my neurologist. They kept pushing for me to get the thymectomy because I am young and generally strong/healthy, but I kept saying no because I wanted to attempt getting the condition under control with just meds first and I was severly afraid of surgery. It was after my breathing crisis in 2012 and other mini scares that I decided to go ahead and do it. I'm glad I did, because I conquered a major fear of mine--but I just hope it pays off. I'm trying to stay positive about it. I know it takes time, but it's hard. I'm handling the Prednisone okay, but I'm only on 30mg daily. After my recent swallowing crisis in December 2013, they put me on low dose Immuran to see if that will work better than the Prednisone. None of us want me to stay on Prednisone forever d/t all the risks...I'm not such a fan of the Immuran either but I need to seek other options as the Prednisone alone doesn't seem to be cutting it. So we'll see. ://


Hello there. The waiting is the hardest part! To see whether or not the surgery worked, I mean. I'm trying to do more than just wait by making sure I'm staying well rested, healthy, etc etc so as to maximize my immune system and my chances; and by extension, my life. I hope this works. It makes sense that it could take that long for the cells to die off; do you think there is research on this? My husband gets frustrated b/c he'll state the surgery was supposed to work, and I start to feel the same way as well. It's had for us to remember that it's going to take a while. It's all still so new in so many ways. I do agree, it does suck a lot. It may suck now, but I worry about how I'll be when I get older because aging is complicated in and of itself. I'll do anything I can to optimize my chances while I still can. :/

Samantha,

How long have you been on Prednisone? Here is the relevant chapter from the MG Manual:

The most predictable response to prednisone occurs when treatment begins with a dose of 1.5 to 2 mg/kg per day. This dose is given until sustained improvement occurs, which is usually within 2 weeks. The dose is then decreased over many months to the smallest amount necessary to maintain improvement, which is ideally less than 20 mg every other day. The rate of decrease should be individualized—patients who have a rapid initial response can reduce the dose on alternate days by 20 mg each month to 60 mg every other day. In those with a less dramatic initial response it may be preferable to change to an alternate day dose of 100 to 120 mg and taper this by 20 mg each month to 60 mg every other day. The dose is then tapered more slowly to a target dose of 10 mg every other day as long as improvement persists. If any weakness returns during dose reduction, the dose should be increased, another immunosuppressant should be added, or both, to prevent further worsening. Weakness invariably returns if the drug is stopped, but a very low dose (5 to 10 mg every other day) may be sufficient to maintain good improvement in many patients. For this reason, the dose is not reduced further than this unless another immunosuppressant is also being given. (MG Manual, page 19)

That sounds like a lot of Preds.

-Mark-