Hey Kate,

Have a great time at your sister's house. It's nice to see you so excited!

Hugs,
Pat

Hi everyone. So happy to have found all of you. I was diagnosed with MG in September, finally. Struggling for years with what the Docs called something in the Lupus family and Fibro. Now I know I have MG, Lupus and Fibro. Nice combo! I take Mestinon Timspan in the morning along with 30 mgs of regular Mestinon. More 30 mgs later in the day adn before I go to sleep. I also take Cellcept to supress my immune system. Bad GI problems. Many days I don't want to leave the house. But I'm still much better with Mestinon than without. My body tells me when it's time to take my pill. Great idea for a thread. Nic eto know how everyone else is feeling.

Kendra,
I have had great results from taking only 30 mg of Mestinon 3 times per day every 4 hours (and a 4th pill about every 4th day). No more shaking, no more dizziness, and rarely any nervousness. This is great! This is after 8 days of the smaller dosage and I feel all of the same positive effects from Mestinon. Now I don't feel crazy. And best of all, I have had no double vision for one week! This is the first time since I got MG that I have not had double vision occasionally during the day, or slightly all day (every day is different). I am wondering if 60 mg of Mestinon actually made my eyes shake giving me this double vision. I can see again!!!

This is a reminder for me that I am so sensitive to medicine and always need a smaller dose than what is recommended.

One other thing that greatly effects my MG is my hormone level. I noticed that for about 3-5 days before I start my period that I get extra weak and probably need more Mestinon during those days. I have never had any kind of "female" troubles and it is frustrating to feel so exhausted due to MG for those days. Does anyone else notice this? Do you take extra Mestinon? For me, I basically collapse in bed to rest after each activity. Any activity makes my heart race during these days and I get tired quickly. It seems that the Mestinon helps for about 2 1/2 hrs instead of 4 hrs as usual...I am wondering if I should take Mestinon every 2 1/2 to 3 hrs during this time.

Keeping records of when I take my medicine and how I felt has been helpful. I recommend it, especially if you are changing your dosage or starting a new medicine.

Thanks to everyone adding their Mestinon experiences to this thread, the information has been so helpful to me.

Desertflower,
That is great!!! I am so glad to hear you have figured out a dose that works for you and not having to deal with the double vision is wonderful!!! I am so happy for you.

I want to thank you for the idea of keeping a log of times and side effects from the Mestinon. I have been doing that and it really has helped!!!

Yes I have noticed that my MG is worse when my hormone levels change. My worst days are a few days before I start my period too. I am still playing around with my dose so I don't know if taking Mestinon more frequently on those days would help but it is certainly worth a shot. Thanks so much for the update!!!
Kendra