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...
Some people may remember me from last year or so...I had ocular MG and my symptoms are still ocular, which is a good sign, I guess. They actually responded very well to the prednisone once I was on it...I had a return of a little bit of diplopia back in like October, but I can't remember having any trouble no since December to about the beginning of this month.
I'm not sure what did it...I think it was stress from some changes at work (not even really bad changes, just a reconfiguration of the office), but I started getting my double vision back and now it's pretty bad. They had tapered me down from 40mg prednisone every day until I was on 30mg every other day and almost a month into that I started getting my symptoms back :(.
They put me up to 40mg every other day for about a week and a half and when that didn't work they are going to put me on 50mg every other day. Is that a weird dose? I would think they would at least have some amount of prednisone every day instead of on-and-off like that, especially since this alternating dose is more than I was taking every day when I was on a steady supply...
They also want to put me on Imuran...originally they said that they didn't really need to because I was doing well, but I guess that's not so anymore...I actually kinda wish I started taking it a few months ago like they originally wanted....
Here's hoping I get my stress levels down...I'm kinda sorry I wasn't around here much for a while because I think it made me complacent about my health, if that's the word...maybe careless? But hello again
I'm not sure what did it...I think it was stress from some changes at work (not even really bad changes, just a reconfiguration of the office), but I started getting my double vision back and now it's pretty bad. They had tapered me down from 40mg prednisone every day until I was on 30mg every other day and almost a month into that I started getting my symptoms back :(.
They put me up to 40mg every other day for about a week and a half and when that didn't work they are going to put me on 50mg every other day. Is that a weird dose? I would think they would at least have some amount of prednisone every day instead of on-and-off like that, especially since this alternating dose is more than I was taking every day when I was on a steady supply...
They also want to put me on Imuran...originally they said that they didn't really need to because I was doing well, but I guess that's not so anymore...I actually kinda wish I started taking it a few months ago like they originally wanted....
Here's hoping I get my stress levels down...I'm kinda sorry I wasn't around here much for a while because I think it made me complacent about my health, if that's the word...maybe careless? But hello again
Part of the reason they alternate the prednisone is they find it causes less side effects taking it that way. On another note: Each time I start to taper off prednisone within a month my symptoms worsen, so it doesn't surprise me.
Stress, heat, extreme cold and just weather changes can cause symptoms to worsen. Hope things improve soon and it stays just ocular.
I think I'm gonna do what worked for me before too and start meditating again...I think easing off the stress did a lot for me.
elinora: Yeah I was really encouraged by that when I was diagnosed, and up until now had a pretty good time of it. I started noticing symptoms at the end of April 2012, saw an opthamologist at the beginning of June who didn't think it was MG but ran the blood test to make sure, found out it was. Had one neuro-opthamologist tell me my blood sugar was too high for Prednisone (A1C 6.7...either just diabetic or nearly so depending on who you ask) and got really bummed because by then I had read it could keep me from going general...went to a dedicated MG clinic and the doctor had reservations about the metabolic side-effects like blood sugar but let me take that risk if I wanted to. My symptoms were mostly gone by the end of July 2012, I could function pretty much normally...so within about two months and a week I had come and gone...pretty successful steroid treatment until the taper.
I was supposed to start Imuran in December but I kept getting sick and they'd tell me to delay it, then last time I saw my MG doc a month ago she said if I'm doing that well, maybe I don't need it, maybe just use a low dose of Predisone, but a week and a half later things started going bad again...I kinda wish I was on Imuran now because it might have prevented this but who knows, maybe it wouldn't have started working yet because it takes a while.
By the way - I got my A1C down to 6.0 in August 2012 and down to 5.3 in March 2013 so ha ha to the guy who wouldn't put me on Prednisone.
Stress is a sneaky thing -- you feel fine when you are under stress--when you are battling dragons or whatever--but the next day you. are. wiped. out. Sneaky!
Imuran has done great by me, and allows you to taper down on the prednisone, which for me had some bad side effects (bone thinning, type 7 diabetes, mood swings, moon face) which have gone away since I've gotten my prednisone dose down to 5 mg. I take 150 mg of imuran.
~joe