Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello guys, i dont remember the exact date but around this time last year, i officially took my last dose of prednisone. Now 1 year later, i feel exactly the same. It isnt quite what i expected would happen.
Anyway, on april 2015, i had a thymectomy. It was 4 months after i was officially diagnosed. My antibody test was off the roof (it was 1200 i think) and my neuro said that a thymectomy would clearly help surpress my symptoms. Now after the thymectomy we started tapering down the mestinon. 5mg per 2 weeks. I was also tapering down my mestinon as needed. I started with 4-5 doses a day and it slowly started going down over the months until i was taking only 1 dose a day.
I thought everything was going great, i even thought i would have the chance to stop mestinon completely. But that was until 2016 started.
Now i dont know if its connected or if the timing is just coincidental (but please tell me if they are). I started a new job at around February (it was my first time working in an office, i always worked at home since i just had surgery a year ago and i needed to rest) and after that my symptoms all started coming back. I started taking 2 doses, and 3, and now, after 7 months of working in office, i was taking 4 doses and i even feel that theyre not enough.
My neuro says that i have nothing to worry about though, since a thymectomy doesnt really make the mg go away, and as long as i dont have a crisis and the mestinon is still working, im fine.
Anyway, i dont really want to go back to prednisone, its the worst drug that ive taken, i hope i dont have to take it again
The worry is if you continue to have to increase the mestinon, then it may not be enough at some time in the future and you will have a crisis -- breathing troubles--and then a long recovery to get back to functional again.
Not sure what I would do in your situation--but first would be to talk to the neuro about alternatives to prednisone, and a plan a what level of mestinon would you start taking the additional drug.
The other complication is that it the thymectomy results may take two years or more to be fully seen--so you could still see improvement in the coming year,
When I was the weakest from MG, I thought prednisone was great as it got me back functional from being hospitalized for breathing problems in June, to being mostly functional and active by Octobor -- a fast response. Then I started worrying about the prednisone side effects and tapered down and had planned to go to Imuran long term, but ended up being one of the 15% who go into medicine free remission.
Good Luck Russ
I too had a thymectomy and felt great for a few weeks but then got worse again. I've been on ivig for four years now along with Mestinon and Cellcept. I never took Prednisone. After ivig I hardly need Mestinon and then after a week I need to start building it up again. The job probably had an effect, because just about anything with more activity can stress our muscles. Hope you do well and I'm excited that you are back to work.. That is huge..be sure to rest and balance your activity after work too. Take care,