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...

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Mestinon & Prenisdone

jaywalkn713
jaywalkn713

hello all, newbie here. I was diagnosed with MG in 2011.  Thanks to God I was diagnosed within a year, the miracles of insurance lol. Anyhow, I been living with this illness for the past six years with little complications. I guess I was one of the blessed ones. I started  on Mestinon 60 mg X 3 times a day. As I got back to my normal routine and I started to try and live a normal life I began taking 60 mg X 4 times a day. I been on it for years and I've managed to live a normal life, except for the occasional flare up due to weather, menses or flu. Which I would have to take 5 or 6 on that day. Anyhow, for about a month now I been really tired, my legs were really weak and hurting really bad, joint knee pain, no chest problems thank God and I had to take 6 mestinon a day.  I had a really bad flare up where I couldn't hardly walk. I missed work 3 days. I ended up going through my neuro and he prescribed me a prenisdone Z pak 4 mg (7 days). That actually made me feel better but about 2 weeks after I started getting fatigued again with leg weakness and this time eye weakness as well. Went back to the doc and he put me on prenisdone 20 mg a day. My question is, is anybody else on both medications ?? Also, is this normal with the illness or could it b something else ? I'm just so concerned that I went Years beinn able to control my weakness and all of the sudden weakness came out of nowhere. How long did it take you guys that get worse ? I've read that the illness is at its worst in the 2-5 years and then it might get leveled. My issue is backwards lol. I wanna hear your stories. 

jaywalkn713
jaywalkn713
Oh forgot to add I have limited resources now since I no longer have insurance. I'm not sure where to look for help, medical wise
JulieSA
JulieSA
i'm not sure if I have MG yet. i'm interested too in hearing others' stories. good luck to you.
MGgotme
MGgotme
Did you have any eye, eyelid, swallowing or breathing problems?
I was under great control for 8 years and then mine flared up. It took them another two years to get it under control again.
Have you had muscle fiber test?
Frank MG since 2001
grecogirl
grecogirl
January 2016 is when I started having weakness in my hands and by April I couldn't tie my shoes. I had weakness all the way down to the my toes. I went to a neurologist at the end of January who finally put me on Mestinon after 4 months and it helped, but not completely. Then I went on predisone and had immediate relief. In September I felt great and went off of the prednisone which I had down to 2.5 mg a day and in 5 weeks, I had a horrible case of double vision that took 4 weeks to resolve. I went back on the prednisone and am still on it and I take anywhere between 5-10 mg a day and sometimes every other day. I take an occasional Mestinon. Some days are better than others and it seems to affect my eyes more than my strength. I don't think there are any really absolutes with this problem. Everyone seems to react differently. I was feeling so good last September, I was sure I would be okay, but evidently not. I just hope I can make due on a low dose of Prednisone and Mestinon.

You should check with the Myasthenia Gravis Foundation. I think you can find it on line and perhaps they can direct you to a physician. Without insurance it is hard to get care as they want the money and actually don't care that much about the patient. Medicine has become an industry and I am so happy I found this site, as it has helped me so much. I am not that crazy about the neurologist, but at least he will let me try to just stay on the prednisone and Mestinon and if I get another bad flare, I guess I will go back to see him or when I need a new prescription.

He did do an EMG twice. He wasn't quite sure in the beginning what I had, but the second EMG showed a hint of MG and so he went with the Mestinon and prednisone. I just think these doctors google our symptoms and go from there!
philosophress
philosophress
Ok, so you're wanting stories - this is a snowflake disease and everyone is different, but your story sounds reasonable for being an exacerbation of MG (of course, I'm not a doctor so it's possible something else is going on). I was diagnosed in 2013 (after having progressive symptoms over previous two years) and mostly stable after a thymectomy, mestinon, and prednisone regimen. I was even reasonably stable while pregnant/nursing, despite having to decrease/drop meds for safety reasons. I had a lot of things all come crashing down this spring (stopped nursing which immediately caused MG issues, father passed away, everyone in our family got sick which stressed my immune system), and ended up in the hospital with a severe exacerbation. Still not recovered from it. My neuro and the doctors in the hospital all said that significant stresses (physical/illness, or emotional/mental) can cause exacerbations and flare-ups; even things like not getting enough sleep for a long period. Any chance you had something like this prior to your MG getting worse?

Also to your other question, yes, many many people with MG are on both prednisone and mestinon. It's the most common combination, and they both do different things. Mestinon causes a short term improvement in symptoms (almost like an aspirin - just works for a few hours), and prednisone dampens the immune system so that your body stops/slows in attacking your neuromuscular junction.