I'm now 6 days post Thymectomy and I'm feeling great, I'm probably doing WAY to much, but I seem to be handling it okay.

My neurologist said that in a month the thymus antibodies should be out of my system and I could start to wean myself off of the Mestinon and suggestions of what the best way to do this would be?

He has also said that I won't need IVIG anymore.... Which kind of scares me, I relied on this every month and would be fairly weak by the time my 28 days was up, I'm very pessimistic about this whole situation.

Also, please don't judge me on this, I smoke marijuna and I'm wondering if anyone knows when it is safe to smoke again after them collapsing my lung???

I did the Thymectomy in hopes it will put me into remission although I'm not holding my breath.

Kimmy, I won't judge you on the pot, however, smoking of any substance is highly damaging to the lungs. And pot can increase muscular weakness. Also, it's a "foreign" substance which your immune system may not like. Right now, your body needs to heal.

I think your doc needs to read up on all of the thymectomy studies. MG antibodies are not only made in the thymus! They are also made in the peripheral blood mononuclear cells. The immune system is fairly complex, so to say the thymus plays the only role in remission is naive.

You need to go by how your muscles feel. Going off of drugs too quickly after a thymectomy - which is a stress on the immune system no matter what type you have done - can put you at risk of a crisis.

I hope for everyone to go into remission with MG. I'm rather skeptical as well. There is drug-induced remission, where you are still dependent on drugs and drug-free remission. The studies are still on-going for thymectomies and what the success rate truly is; whether it's the thymectomy alone or in combo with drugs that does the trick.

Personally, I don't do anything that might push my immune system to the brink. I already have MG and celiac disease. I don't want any more AI's. So don't just think about MG. So many people tend to have more than one disease, sorry to say.

I hope you continue to get better. Don't forget how easy it is to overdo with MG!

Annie

Kimmy,
It was just two years since my operation (Vats surgery done at Columbia in NYC) and I'm happy to say I'm off all mestinon, still going for the IVIG but have moved it out to every 10 weeks.
The first year after my operation I did not notice any change, was taking 60mg of mestinon every 4-5 hours. Even the firt 8 months of the second year I noticed little change, but the start of 2012 I felt a big change. I slowly started only taking mestinon before a meal,about 3 pills a day, then two and in Jan stopped all mestinon (I never took any other medication).
I had the operation at 66 years of age, some doctors don't recommend it in the later years but lucky for me the surgeon was a believer in the treatment.
Not sure about the weed, I do drink and that has never seemed to bother my condition which was mainly in my eyes (no double vision) and mouth, eating, talking etc. So good luck and it may take longer than You had hoped, but eventually it should help.
Chris

Glad you are feeling better. However, be careful not to overdo for a couple of more weeks.

I also agree that your doctor is being very optimistic about what the thymectomy will do. One can be very sick with absolutely no antibodies showing on blood tests and thymectomy is certainly not a guarantee for remission. I've never heard of a "planned weaning" of meds "just because" a thymectomy was done. Weaning is usually done because the body indicates it no longer needs the meds. Also, it can take up to TEN years for improvement to occur with thymectomy--if it occurs at all.

Of course I'm hoping you have fabulous results. I have heard of/seen it happen. Just don't totally count on it happening right away, OK?

As for the weed, can you switch to vaporizing or edibles? They would be a lot better for your lungs. The last thing you need is to irritate your respiratory system---for the long haul. I know some cig smokers with MG, and they do tend to have more problems overall than those of us who don't smoke.

Hope you continue to heal quickly!!!!

I take 60 mg of Mestinon 3x a day, and I was thinking I could drop it down to 30 mg and see how I felt, but I'm in no rush to try that, like you say Annie it could put me into to crisis and I'm hear alone with my two children, my husband works out of town for months at a time, I can't out myself in potential serious situations.

I know we should always try to optimistic but knowing how I felt before my dx I don't want to feel that way ever again

I read a post yesterday where the lady referred to Mestinon as a magic pill and I say they same thing, it my wonder drug, from the Minuite I took i felt better.

I am 5 months post transsternal thymectomy. My ptosis went away within a month but I stayed on the mestinon (15mg 2x a day) till the beginning of April. No symptoms since then (I only had the ptosis). The only problem, which is worrying me but not the doctor, is my antibody levels are through the roof and have not dropped at all. I'm a worrywart but am hoping and praying that the levels eventually go down. My doctor says that the numbers aren't the concern in MG, the symptoms are, and since I'm symptom-free right now, things are good.