One mestinon a day is not very much at all! It lasts only about 4-ish hours, so that's quite low indeed. Maybe your neuro is starting slow to check for gastro side effects? For purposes of comparison, I take 90mg every 4 hours.

You should feel improvement about 30 minutes after you take a dose, faster, possibly, if you take it on an empty stomach. From what I've read on this board, that does hits its peak at about 2 hours in, then begins to drop away.

It takes me about 20 to 30 minutes for the mestinon to work. I can usually tell what time it is by the shakey feeling in my legs and arms. After 60 mgs and 20 minutes I am "normal" again. Sometimes I can go up to 7 hours before having to take it.

I wonder if your doctor is just seeing how you respond to mestinon. I was started on 4 x 60 mg a day, one year ago and this dose has not changed.
I find that about 1/2 hour before my next dose is due that I feel quite weak, have a bit of eye droopiness and a hoarse voice. Within 1/2 hour of a dose this has all gone. When I am going out I time it around my mestinon dose, knowing I am at my best 1/2 hour after a dose and for the next two hours. Hope this helps, and good luck.
Claire

My doctor started me on one 60mg the first day. I could feel the side effects within an hour - a little more saliva and sweating. I was able to stand that afternoon while we changed a display case without any sitting breaks.

The next day I was to take two pills and I was able to stand for a whole hour of Tai Chi instead of 10 minutes up, 10 sitting to rest. I was able to vacuum and do laundry without being breathless. But at 4-6 hours, the old weakness symptoms would return.

I'm now at 3x 60mg per day; first one when I first wake up, another at lunch and last at supper. If I have to make supper alone, I have to take pill first. I just did some shovelling at hour 6; I couldn't even lift the shovel before so I am definitely much less weak even when the dose has worn off. I just started the Mestinon in November but had to go off it for SFEMG testing and I was back using a walker to get around only a small section of the IKEA store near the hospital. My doctor asked me to write a Mestinon diary so I wouldn't miss any subtle changes.
Flutebell
Flutebell

Please don't feel like you are asking too many questions or too often. That's what we are all here for because we've been in your shoes before and we know what you are going through.

I was just going to suggest a diary. I found it immensely helpful in the beginning and I think it was a useful tool for my neuro to dissect each day on the medication. I would note what time you take it, with or without food, when you notice it kick in and wear off, how you felt when you woke up that morning and how you feel as you go to bed at night. I made a journal thing on my tablet that made it easy to track my strength, fatigue, ptosis and breathing difficulties. I used a scale of 0-10 for each of those issues and rated it at each mestinon dose through the day and added notes as needed to fill in the blanks. I still find it helpful to go back and review that stuff periodically. It helps me see the positive changes since I was first diagnosed. I am on 60 mg four times a day. I found that the doses were way too far apart with three doses a day, and thanks to the diary it was apparent to my neuro as well.

Please keep us posted (as I said in your other post).
Aloha,
Angie

No apologies necessary for asking questions. I'm sure you can already see we are in a constant state of assessment. I'm not sure that ever goes away. Angie's suggestion to track symptoms is an important one as things can change quickly and reporting responses to your neuro is vital to treatment.

I currently take 60mg of Mestinon every 2 1/2 hours and have my neuros permission for wiggle room to increase or decrease if needed. Also a 180mg mestinon Timespan before bed.

Finding an activity to measure muscle strength is a good tool. I try to repeatedly stand on my toes until I notice fatigue, or walk until I notice shortness of breath or weakness in my legs. Can I left a gallon of milk, that type of measurement helps me track symptoms.

Good luck to you and keep asking those questions.
Larissa ;)

I really appreciate all of your encouragement and feedback.
I notice things like my arms being terribly fatigued after washing my hair in the shower, walking and talking nearly impossible and any real activity after 5pm I am done for.
I am typically in bed and asleep by 7pm - which is not that convenient when you have a family and a husband that wants to spend time with you after your son has gone to bed.
I believe that tracking my symptoms as shared is a great idea and one that I will get right one. As I said, I don't notice any changes at this point but hopefully after I see my Neuro again in a few weeks, we can get this better in check! :)

Hi I was started ( In Dec) on 60 mg twice a day and I am now on 120 3 times a day... i usually take it 8am midday and 4pm, but my neuro says i can take more in the evening if I go out.
Are you not on anything else? He tells me the Mestinon is really a band aid. To actually stop the antibodies attacking you need to be on something else ... Im on Mycrophenolate (Cellcept) No idea if its working yet as the Mestinon controls symptoms to a large extent but they are going to do EMG again soon to check.