Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I was also taking prednisone but it had not taken effect yet. As the prednisone worked, I backed off and took less and less mestinon as the side effects were bothersome (extreme perspiration when I did anything, night time leg and foot muscle cramps that were agony and stomach pains). Never had to worry about constipation ;-)
If you take more than your prescription, you run out of pills, and those of us who depend on them get rather desperate if that happens. At first I kept having my neuro's office rewrite the prescription, but having the max written meant I quit worrying about running out as I never quite took that much. I had an idea of what a drug addict feels like when they can't get their next fix!
Good Luck
I can call my neuro any time if it is during the day I talk to his nurse I also have some freedom with my drug amount.
So good luck and keep a diary so when you talk to te doc you will have it with you and be sure to write all your questions and conserns down.
Chuck
Please understand that if you feel the need to keep increasing your dosage, it means your underlying condition is worsening. Without treatment, you can get much worse. You need treatment to get off of mestinon. Hope the Imuran works for you. It may take a year to show benefits. I hope it works sooner. May want ask about IVIG to push back your MG until Imuran works. Sometimes it can take a lot of time and devotion to figure out what works best.
Get exercise as much as possible and set goals to improve upon.
That is my advice for you along with sending luck.
Best wishes for peace,
TJ from CA
I think the dosage is entirely individual and can be adjusted as needed but yes have a word with your neuro as if you do it yourself then i guess you run the risk of getting the overdose symptoms which (please correct me if i am wrong) are very similar to mg symptoms???!!
I hope you start to feel better soon
I took it throughout the night. I wouldn't set an alarm but I would take it when I got up to go to the bathroom.
My first neuro said no to more but the specialist said 90 was ok to take every 4 hours. try 90 today and see if it helps . I think you will be happy you did. You will get more relief immediately. This drug only last 3-4 hours in my system. In my bad times I could tell immediately when. It was wearing off.
You can just call your neurons office and ask for an increased prescription and they can call it in for you. Just tell them apoplectic in your support group take 90 and you tried it and it helped and you are requesting more.
Remember we are part of our health team.
Have a great day.
I know these questions must seem really small but they're definitely not for those of us new to MG and the experience shared by the support group here is a huge help, thank you again!
I'm getting my thymus scanned tomoro ... and meet again with the neuro doc in mid march .. to .. hopefully, start the imuran.
Thanks again for the continued help and advice.