Well, when I started on Mestinon it was in liquid form cuz' I was too weak to swallow pills, but I was also given 30 mgs - 3 X a day. Maybe it was b/c I was so weak, but I did feel it within 20-30 min (at that point I was too weak to even chew or swallow ice).........After about 30 min I was able to chew/swallow ice. I actually cried!
I am so sorry to hear you are going through this....do you have a support group? Are you feeling OK today?
One thing to remember with Mestinon is to take it after you have eaten a bit. You may have tummy problems if you don't - learned that the HARD way!
Hang in there and let us know if you need anything!
Erin
Quote:
Originally Posted by jaynurse05
Hi all,
Well, I have two full diagnoses and one probable diagnosis. My rheum diagnosed me yesterday with undifferentiated connective tissue disease (UCTD) and Fibromyalgia. YEA!, what a combo. On top of that, my neuro is starting me on a med trial for MG. I have had antibodies come back positive and my thymus is enlarged. My forearm SF EMG was negative, of course. So now we are starting Mestinon as a trial.
She is starting me on 30 mg twice daily. Now, according to the drug manuals that is the lowest starting dose. But from what I have read, most MGers need to have it at least every 6 hours. This initial dose seems really low.
My question is how am I supposed to have an effective trial if I am on such a low dose? I am also concerned that if/when I need to increase, I am going to have a buy a new script and I see this going on and on. Any suggestions?
Also, is it common to not see your neurologist for 3 months after starting a trial?
Any help would be appreciated. Hope you all are well and strong today!
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