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-   -   Mestinon (https://www.neurotalk.org/myasthenia-gravis/189656-mestinon.html)

CL777 06-07-2013 11:41 AM

Mestinon
 
I am new to the group but not to MG. I was diagnosed in 2001, followed by thymectomy. I have had bad times followed by good times. Recently i had relapse and was in the hospital 3 times in 3 weeks. At this time i can't take prednisone anymore because it caused arthritis through out my body and i now have so many stomach issues that it is difficult to take it. I am also having such a problem with mestinon (generic) which i have always taken. I was down to 180 timespam and 30X2 a day. It is very hard to get a correct dose. One way is to much and i get a headache and dizziness and palpitations and a tight throat and gastro problems..the other direction is to low and i become weak all over. I am very frustrated and have been in bed basically for over 2 months. I also am on cellcept 1000x2 which i have never had problems with. Neuro DR's goal is to get me off of mestinon for my stomach.
During the time in the hospital i had 5 IVIG treatments and the last time 5 Plasma Exchanges and am being set up right now for 3 more IVIG treatments.
My question is, do any of you try taking mestinon in other doses then 60mg 45mg 30mg and 15mg? do you break your meds to try to take doses like 35mg or 40mg and etc? I know it's difficult to get a correct dose but i need to make some changes.

4-eyes 06-07-2013 12:30 PM

Mestinon syrup is available. That would allow you to be very precise.

Good luck.

limpy 06-07-2013 08:57 PM

I can usually only take mestinon in thirty mg doses and I just have to take it every two hours. It doesnt bother my stomach anymore at this dosage.

cait24 06-08-2013 03:27 PM

I am on 60mg of mestinon every 4 hours (4 times a day) and 180 time span at night. The mestinon is wearing off at about the 3rd hour. I was going to ask the dr at the next visit to try 30mg every 2 hours so I do not get the MG breaking through.


kathie

CL777 07-10-2013 02:45 PM

Quote:

Originally Posted by 4-eyes (Post 990215)
Mestinon syrup is available. That would allow you to be very precise.

Good luck.

I was started on the mestinon syrup in the hospital 3 weeks ago and had an IVIG infusion. The syrup is so much better for me to use. I have been set up for monthly IVIG infusions for 6 months (starting next week) until cellcept kicks in more. Been three weeks since my last infusion the 40mg q 6 hrs of mestinon is too much now and i need to lower it. It's great to be out of bed more and doing things around the house after 3 months of being in bed.

4-eyes 07-10-2013 03:43 PM

That's really good news! Enjoy every minute of improvement!


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