Hi Doug,

I've taken Mestinon off and on for over 20 years now. It has worked OK for me. Not great. Usually, it just gives me enough strength to get through the day, but not enough to feel normal.

The GI side effects are the most bothersome. I end up taking Immodium to help control the symptoms.

One of my neurologists insisted on taking it every 4 hours, so it was helpful for me to get a watch with an alarm that I could set. Also, another neurologist (really one of the top MG experts in the country) who refused to use Mestinon Timespan. He would only use regular release Mestinon.

Hope this helps. Jen

My mother was on Mestinon for 5 months with little improvement. After suffering a crisis in October, Mestinon was replaced with Imuran.

I've been taking Mestinon for couple of months and it definately helped my droopy eye lids right away. They still droop sometimes but it helps alot for that symptom. Otherwise I agree with jen0517 it helps me get through the day but not enough to feel normal. I still feel extremely tired at the end of the day.

I am taking Mestinon for 2 months and right away had to have stomach meds for the problems that started right away. But I have to say that my eyesight has improved tremendously. I was surprised that the improvements occurred so quickly. I am on Prednisone already for breathing problems so was told that I may need Imuran at some time soon. I see my Neurologist soon and will see what she says.

Becky
rhulce@icch.org

I have being taking mestinon 3 times a day with 1 prednisone and seem to be going really good. hate to think what the med's are doing to me inside but i have not yet experienced horrible side effects. I can eat suck see and whistle...lol
very early days for me, will mestinon stop a crisis?

I was taking Mestinon 4 times daily, it helped in the beginning but stopped working after about 4 months. It then started causing additonal weakness which unfortunately can happen. I've also been taking high doses of prednisone since March. My doctor took me off Mestinon about 2 weeks ago.

Hi have just had the Mestinon 60 increased to 3 times a day with 180 sustained release once a day. It took over a week but I am not feeling stronger. I asked for the increase because I was just SO tired. I needed a life and maybe now I can get back to what I used to do. Becky

I have to take Mestinon every 3-4 hours, I've found that I do not need a reminder, my body tells me when I need another dose. I have also recently been started on a once daily Timespan, which seems to do nothing to help. I initially started on Prednisone and Mestinon, but my body will not tolerate the Prednisone at all. Are there any other effective medications?

I believe this website was started by a women who developed ovarian or breast cancer. She lived an incredibly healthly life style and was young when it happened. She's an awesome example of someone who does not give in to this disease.

Yes some of the best breast cancer support and information websites have been started and run by women who have been diagnosed with breast cancer. FORCE was started by Sue Friedman who was diagnosed with breast cancer at age 33 and who tested positive for a BRCA2 gene. There's very good reading about hereditary breast and ovarian cancers on the FORCE website, and links to more good reading on this webpage www.cancergen.com/geneticsreading/breast.html . In Australia where I live Janine who was diagnosed with breast cancer and is a skilled webmistress runs the successful Aussie Breast Cancer Forum at www.bcaus.org.au/forum/ .
I find it endlessly interesting how some people going about their everyday lives, when faced with an unexpected challenge, sometimes come out into the public arena and fearlessly fight for a cause, with talents they probably never knew they even had in many cases.

I'm not familiar with his site. Thanks for the post. I'll check it out

Hi - I was first diagnosed with MG in 1982 and went on mestinon for symptom relief. It helped but I suffered severe stomach cramps and diarrhea. Did much better only using prednisone for quite a few years.
For the past 7 years my symptoms have been controlled by prednisone plus azathioprine (Imuran), but there have been side effects.

I suggest looking at my other posts where I've written about my experiences.

Frank

I was just recently diagnosed with MG and was on the generic form of Mestinon for about a week. Within that first week of taking the medication I began to have an allergic reaction to it. The doctor said that it's rare for people to have an allergic reaction to Mestinon itself but more likely to the generic version of it. So within the last 4 days I've begun taking the brand name. So far so good.

I used to take Prednisone (1999 cause they couldn't diagnose me) then they found out that I had MG, that's when I started Mestinon. That was in 2000, I've been on it since; until this October my doctor decided to put me back on a low dose of Prednisone. It's been great for me so far. I've been more active, I've been walking more, even taking a salsa class and basically feel as if I'm living my life again. Today I went to pick up my meds at the pharmacy, the pharmacist didn't want to give me the meds unless she spoke to my doctor, because according to her the combination of both medicine causes more weakness; that's why I ended on this page. So please if anyone has ever experience that sort of weakness please do share your story. Thanks and be well.

Mestinon will not get you into remission of MG. If you stay on Mestinon only, the MG will need to retreat on its own, and my research has come up with a minimum of six years for that to happen. I react well to mestinon and I use the generic MEstinon and Mestinon timespan in conjunction, but they only treat the symptoms of MG, not the underlying disease itself. For that, I have just completed a round of IVIG treatment, and I am taking Cellcept, as directed. Based on my research, I believe I am doing the safest, and most nationally recommended by experts in the field of MG for treatment, and I wish I would've started it sooner. I spent over four months on Mestinon only while my underlying disease progressed and I tolerated the symptoms on Mestinon.

Bottom line is, it realy may depend on how bad your MG is to decide what you are comfortable doing, there are risks involved with everything really. Again, Mestinon is NOT a treatment for MG.

Best wishes for peace,

TJ