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...
I got a good response to my post about having problems again. When I first started with symptoms (2 years ago), it was weakness that started in my hands and went all the way to my feet. I had a brief episode of double vision, but it went away on its own. Then I started the Mesitinon and Prednisone and regained what seemed like normal function. Then as I posted, stopped the Prednisone and got double vision and then after about a month that went away with upping the Prednisone to 40 mg and then tapering back down. Now as I posted, I am having problems again because I went to a low dose of Prednisone and started to increase it again to 12.5 currently and 3-4 Mesitinon a day.
Now my question is, everytime it has been some sort of different symptoms. I am experencing now a feeling of some weakness, but no double vision (keeping my fingers crossed). My feet seem to slap on the ground when I walk and I cannot flex my foot and have to hold onto something if I want to stand on my toes. My balance is iffy at times. Sometimes, I feel other sensations too, but again, when I take the Mestinon it really helps, then other days it doesn't do so much. Is this part of the symptoms, that is attacks different parts of your system and muscles? It seems there isn't a pattern. I am going to see the neurologist the end of December. I will probably have to up my Prednisone some more, but for now, I am just getting by. I felt really good Monday and then so-so the rest of the week. Now this has been a bit of a stressful week for me in terms of work (I work at home), but other than that, I haven't been doing anything out of the ordinary, but I know inside I just feel depressed by all of this.
One of the complicating factors in dropping prednisone below about 15mg/day is that above that your adrenal glands have been shut off, and below they may need to get going again to produce cortisol again. That can be difficult. The rest is from the internet:
. "With prolonged suppression, the adrenal glands atrophy (physically shrink), and can take months to recover full function after discontinuation of prednisone. Withdrawal symptoms and signs (weakness, fatigue, decreased appetite, weight loss, nausea, vomiting, diarrhea, abdominal pain) can mimic many other medical problems."
So along with MG symptoms returning, one can have the adrenal insufficiency symptoms. I had them for a few months after stopping prednisone even though I was in MG remission.
Good Luck
Russ
Wski, are you taking Prednisone. You're right about juggling the meds though. I took 3 Mestinion this morning, one hour apart from each other, as I was playing tennis and I felt pretty good. I didn't take anymore the rest of the day, so that seemed to work for today!
Now for Russ. I am taking 12.5 mg of the Prednisone and the Mesitinon is a crap shoot, but I have not taken more than 4 in one day. I guess I will up my Prednisone to 15 mg and see if I feel any different. I hate it as I was getting some of that weight off that I gained and got my sleeping under control and wasn't hungry or so it seemed, all the time!
I am wondering if I can get somewhat of a handle on it with the 12.5 mg of Prednisone and the Mestinon ad lib, perhaps I should just do that, as I don't think Prednisone cures this, does it? Thoughts please!
Nothing "cures" MG now. However, we can have remission of our symptoms if we suppress our immune system enough, and that set point is different for each one.
My neuro said she had many patients who lived at 15mg prednisone per day for years (although she thought alternate day doses were better), but she was very concerned I not be pushed into type 2 diabetes, which she thought would happen.
I think if you were you, I would look at cellcept as a long term alternative as folks seem to have less side effects (at least I think that). That means gradually taking cellcept and eventually trying to get off prednisone.
Good Luck
Russ
Med juggling should be a circus act. Each of us has a different set to juggle. Latest is CellCept. "Let's start cellcept and see what happens". Nice. WBC went WAY down and, after blood 2 months, told NOT to take ANY more at all and protect yourself from any and all sicknesses and infections in or around. Increase Mestinon to 240mg x 3/day. Add imuran into the mix. Voila.... another juggling act...
I'm not trying to be too lighthearted or to make fun of the attempts to help, after all, it is the PRACTICE of medicine. What works for one isn't necessarily the end all be all for another. It is frustrating, though, and knowing we are not alone in our journey can be helpful.
Keep looking up! I feel so much better knowing that we are all together in this with an understanding of that which others will never truly get...
Like I said, I will see him the end of this month, but this site has helped me more than he has at times. He is more or less leaving me to my own devices, whether he likes it or not and I guess that is all they can really do, as nothing really seems concrete in the way people react to it or the medication. He said my case was quite different from most, in that I could still stay so active and actually felt great, but lest I digress about that! ;o(
So thanks guys, very helpful. I think for now I'll up my Prednisone to 15 mg and keep using the Mestinon as needed. I took 3 again in the morning, one hour apart today as I played tennis and it does seem to hold me throughout the day, but I still feel a bit off, either that or I just suck at tennis!