Taking MG to the next level......
 

I would love as many opinions as I can get on this.
I think my MG is mild, double vision, core weakness (cant hold myself
upright), and extreme fatigue are my main issues. I am on Mestinon only and
my symptoms have continued to get worse. So I know that my treatment
needs to get ramped up too.

Monday I see my neuro and I am going to ask for more meds. I would like
Mestinon every 4-6 hours, this should adress my core weakness. And I am desperate for something for the fatigue. Any suggestions? I read on here the common treatments. Cellcept, IVIG, plasmaresis, etc.....
But can anyone tell me if or what drugs and/or treatments made a difference in their fatigue?

Thank you in advance for any suggestions and insights!!

If the MG is better managed, the fatigue will go away automatically. It's hard dragging ourselves around with the fraction of muscle strength of people who are non-affected! The immunosuppressants will not help fatigue, but they do help reduce the symptoms, which in turn WILL help fatigue.

Hope this helps.

That does help! It actually didnt occur to me that way. So just getting more Mestinon everyday might be enough. I sure hope so.
If it isnt, I wonder what would be next.

Mestinon just temporarily relieves symptoms. It does not relief the source of the problem.

kathie

Hello Sheri, One test that can be overlooked is to have one's iron levels checked. Often, people with chronic conditions can be anaemic. I would like to know how much mestinon you are currently taking before I toss in my "two-bits" about your mestinon.

Nice to meet you....:)

Kathie, Unfortunately I get that Mestinon is just symptom management, but I'll take what I can get!

I am only on 60 mg of Mestinon 3x a day.That seemed okay for the first couple of months, but it hasnt seemed to even scratch the surface lately.

Hello Sheri, There really isn't a standard, or correct amount of mestinon--it really is individual-specific and as well, it can and will take time to find an
amount that "generally" works for you. Less is truly "more" when it comes to this medication. As Kathie said, it helps to relieve symptoms. One day it's perfect, the next day it isn't, and so on. I haven't taken it for several years, having been on it for many! What worked well for me, once I and my physician fiddled with it (and that took years, and a great deal of patience) was 30 mg, every 3 to 4 hours. My physician prescribed 60 mg, only once a
day, when we began.

I am on 60 mg x 3 and 180 mg at night of mestinon. It used to be 90 mg during the day, but they decreased it when I went on 40 mg of pregnisone.

They fiddled with my dose for 5 month until i got to this dose. I found more frequent doses (every 4 hrs) made me feel better than the higher dose of 90mg.

I start IVIG in a couple weeks and I am going to ask to go on cellcept as they wean me off the pregnisone. The pregnisone has made the MG more stable and I am grateful for that. I am also less fatigued but not stronger. I no longer sleep 15 hours a day.


kathie

When I was diagnosed in 2005 my doctor has had me on 180mg of mestinon 2 times a day, and that works great but as of late my body either is getting used to it or what If I take the perscribed amount my body tells me I have taken too much like I oded on it, the severe diaria the vomiting and the occastional passing out but I didnt take to much just the 180mgs as persribed so I dropped the dose down by half a tablet or 150mgs but can still feel the weakness though

I am also newly diagnosed, I am also so confused about what I am supposed to do and how bad does it need to get before the doctors change meds or whatever they can do. I take 90mg mestinon every 3-4 hours plus an extra 60mg in between if i can't breath, 50mg prednisone daily, starting Imuran today, have had 2 5 day courses of ivig in the past 2 months. I live in a very rural area and doctors here don't seem to know much about mg. I am traveling 2 hrs. away to see a neuro. i can't keep my head held upright for more than 10 min. very short of breath, choking on my own spit, and my vision, when I can keep my eyelids open is horrible. The doctors have never given me any info on mg or said if this or that happens, do this. i just wonder if anyone else out there has had this experience, and how they handled it?