Hi, It's me again. Hope you read my last comment on your previous discussion to explain what I meant about being alone.
Anyway, some people said they noticed the difference right away starting on Mestinon. I however did not. I am glad they started you out on a lower dose, because I was started on to high of a dose and actually got worse. I am now on 30 mg every 4 hours, so I take it 6 times a day. That means I have to get up in the night to take one, but what a difference. Originally it was 60 mg three times a day and I found there was to big of a gap between after dinner and the one in the morning. Also eat something before you take it. Now I notice my weakness isn't as bad, but it has not helped my eye problems at all. I admit I wish it help me more and for some of us it takes a while. For others the results are right away and I hope that is what happens with you. Others will post their experiences soon. Wish you well. Never alone here for sure. Love, Cathy

It really helps me and I have never had any problems. It reduces my symtoms of eye weakness, walking difficulties, and gives me energy to eat better and just feel more together. I started with 60... 5 times a day when first diagnosed. Now I take 90 every 3-4 hours. The more I rest the less I need. I am just happy I don't take through the night anymore. I was taking through the night after my breathing issues were severe.
Ann

Ann, were you positive or seronegative on your tests? Someone mentioned that Mestinon works different with those that are seronegative. Have you heard that or was I dreaming?

Hi Cathy,
We have at least one AchR seropositive person that did poorly on Mestinon (Ross) and others for whom it has helped everything but the eyes. People who are MUSK seropositive may not respond as well.
The main problem with seronegative people is that they may not have autoimmune myasthenia at all, but congenital myasthenia. The genetic problems may be noticed at almost any age and some of the congenital myasthenias do not respond to Mestinon, since the problem is somewhere else in the junction. CMS is even rarer than MG or under diagnosed or both, probably both.
b.

I don't know that the Mestinon is the cause of the going pale. With me, my daughter notices that I am starting to not do well before I do because I go extremely pale. I started Mestinon 30mg 4 times a day, but once I started feeling better and doing more, I needed more. Now I am up to 60mg 4-5 times a day and I am still trying to figure out timing. I am feeling for you! What a nightmare to have to deal with kidney stones on top of MG! Sending you lots of positive "juju"!

Upset stomach and diarrhea are common side effects. Taking it right after eating helps.

I started at 60 mg doses, 3x per day, and had dramatic improvement in vision. When tired or ill, I find that sometimes I need 90 mg 2x/day and 60 mg at bedtime.

Increased the frequency of bowel movements but did not get the dreaded diarrhea. One friend has used it over 20 years - at much higher doses than me.

I had initially started with 3 mestinon of 60 mg. each.every 5 hours but i experienced that after taking mestinon my weakness used get worse for at least fitst 40 minutes. So i switched over 30 mg. dose of mestinon every 3 hours. But mestnon only relieves symptoms and
with out support of prednisone and azatheoprine long relief can not be achieved. One should arrive at right combination of these drugs in
consultation with their neuro taking care that there is no excess dosage of Mestinon as it has reverse effect sometimes.

The recommendations to the doctors for Mestinon dosing, at least in the Handbook for Physicians at the MGFA website are interesting to say the least. It actually says ideally the person should be feeling the effects of medication withdrawal before the next dose. The pharmacology of Mestinon is this: action starting 30 to 45 minutes after ingestion peak levels in one and a half to three and a half hours (fasting --with food) duration of effect 3 to 6 hours.

So it makes sense paresh that your symptoms should be worse the first 40 minutes after you take your medication, because that is the time of least medication in your bloodstream. So consider the pharmakenetics of the drug, when you are wondering if it is working or the effects are from your drug or your MG. Most of us are not prescribed the drug at reasonable intervals to be symptom free, at least initially. So it is possible if you are a rapid metabolizer that all the drug effect could be gone in three hours and you have 30 minutes before the next dose takes effect. If you are taking the medication every six to eight hours, how many hours is that leaving you without medications?

bweeds explanation is dead on( forgive the expression)with how my neuro explained it to me and what I have read. You can go into a cholanergic(?) crisis and become ill if you get too much so they start you out slowly. I hope you talk to your neuro every week while they are trying to get you where you feel better on this. I was able to work with mine and get mestinon increased to a helpful dose in 3 weeks. It is a blessing for me.

Do you get IVIG? This made me very pale for a day or 2.

Best

J

Thanks bweeds
I was beginning to think I was nuts because I want more at 2 1/2 - 3 hours for sure.
Thanks
Ann

I am only starting on the Mestinon. No IVIG or steroids to start with. I did push it today. Drove 2 hours each way to meet with a customer and had a 2 hour meeting. Then did a little grocery shopping when I got back. A soon as I got home I laid down for about an hour or so. Got up felt good and took my evening dose of 1/4 pill. About 45 minutes later I was up the street talking to some neighbors. Went to jog across the street for something and as soon as I hit the grass on the other side my legs went out (my thighs felt like noodles but weren't hurting like they were sore like before) and I was down on the grass on all fours like toddler. My poor pride!
Not sure if I was out of Mestinon or I am getting worse or I over did it or what. I only had tremors from physical exertion before. Never had my legs or anything give out. Should I call the neurologist and tell them what happened?

At least on my screen, your original posting and your last appear together. I think if you read them like that, you have the answer to your question. Mestinon is magic for some of us, but we cannot expect to immediately get back to the person we consider "me." By the time we are diagnosed, many of us have muscle atrophy, muscles that are tired of doing the work for the most affected ones and a desire to be our normal so strong that it over rules any good sense we may have had regarding the need to go slow. May you be up jogging with your pride intact as soon as possible. b.