Your doctor should be able to up your rx. I currently take 1 and 1/4 tablets every three hours during the day. My doctor wrote the prescription for a bit more than that so that I have some leeway.

Take care!
Pat

Agree, some days I take more. Ask your dr to up prescription. Good luck

I'm wondering what/how your rx reads? Does it say like 5-6 per day or as needed?? It varies so greatly from day to day that I wonder what the best way to have it written is?

Just make sure you don't run out of refills, and when your current bottle gets half-full, I'd call the Pharmacy and get the next refill ready. When you get down to only 1 or 2 refills left, you'd better make sure you got an appointment with your Neuro soon (within the next month or so) so you can ask for some Prescription Refills.

Or, when you get down to your last refill, maybe you could call your Neuro and have the refills sent electronically to your Pharmacy. I'd make sure the Neuro does that before you get low.

Take Care.

Trust me I am terrified of running out of mess so that is not an issue. I am just wondering do they write the rx for like 6x a day to be sure you have enough??

My neuro wrote my script out for one every four hours (6/day). It's usually more than I need but it's nice to know I won't run out. I did not have to ask and he did that. Maybe you just have to ask your doc.
Good luck.
Al

Thanks Al, that's the info I need I will ask her.

Maureen

Last time my neuro upped my dosage a little I just kept watch on my bottle. I estimated I'd be more than a week short and gave his office a call and told them. The pharmacy a day later said they hadn't heard from the office, and it took another day or two to straighten it out. You do have to keep on top of things, because miscommunication happens. The pharmacy said they still hadn't heard back when I went to pick it up, but my Rx was already changed and ready. I have no clue what went on there, lol.

I do make sure to always leave enough time to sort out any trouble, because I can't last a day without mestinon right now. My pharmacy orders it only for me, so there isn't extra stock and it takes at least a day or two to ship.

If you can work it out, get a little ahead of your Rx to assure you have extra pills in case of an emergency or natural disaster.

Maureen,

You needing more mestinon is a sure sign that you need treatment. I suggest you seek treatment ASAP and tell your doctor you wish to have treatment. Mestinon helps us, but it is doing NOTHING for the underlying condition of MG. You need treatment to actually push it back. Please be careful!

TJ

Actually, I am just working on increasing my prednisone, so the mestonin is the piece that gets me through. The issue is that with traveling to dif time zones and longer than normal work days, some days I have been forced on certain days, not all, to take more than the prescribed 4x a day. It sounds like I just need to have the Rx written as "as needed" or every 4 hours so that I can have a small stock pile for those "special days". Hopefully after the next few increases in prednisone, my need for mestonin will decrease.

I was told the max to take would be 120mg every four hrs. I never took that much at once, but I did take more than that overall average in a 24hr period. Make sure you watch for caution signs (runny nose, cramping etc) and remember that too much mestinon can make you weaker. Finding the right dosage can be tricky. Again, if you continue to need more over time, look to treatment for the answer.

Be well