gdomaracki Posted February 4, 2006 Report Share Posted February 4, 2006 Have any of you been put on pyridostigmine/mestinon? Reactions? Quote Link to comment Share on other sites More sharing options...
futurehope Posted February 4, 2006 Report Share Posted February 4, 2006 Just started it for the second time yesterday. I have the liquid form of the name brand Mestinon.I'm going to be taking 1 ml for a week, 2 ml the second week and 3 ml the third week which will wind up being 15 mg of Mestinon. I'm taking it in the AM with food.So far, the only thing I notice is a slight sensitivity when touching my temples like they are a bit sore. This is an unusual reaction, but I'm determined to keep going with this trial as I need to find something that helps.Are you going to try this med? Let me know how it goes with you. Quote Link to comment Share on other sites More sharing options...
DancingLight Posted February 4, 2006 Report Share Posted February 4, 2006 Welcome to the forum!Mestinon is definitely a 'hot topic' these days on the forum and many of our members have tried it with varying results...I recommend doing a 'search' for Mestinon...you will find a LOT of information and topics on this.Emily Quote Link to comment Share on other sites More sharing options...
michiganjan Posted February 4, 2006 Report Share Posted February 4, 2006 I am trying it right now. Took me about 3 weeks to work up to the starting does of 1/2 pill 2 times a day (60mg pill).So far, I may be a bit less potsy on my feet, but really can't tell for sure. I certainly have constipation though and have had it steady since starting the mestinin. Now that is something unexpected with this med.Perhaps the constipation means I am not not taking enough of the med to get any effect at all. I started cerefolin shortly before starting mestinon. I wonder if it is the constipation culprit?I am going to stay at this dose level for at least 2 more weeks as I have a colonoscopy to get through. Then I will increase it.Do search for the other mestinon threads on this forum. They are very informative. Quote Link to comment Share on other sites More sharing options...
ariella Posted February 4, 2006 Report Share Posted February 4, 2006 Hi I take mestinon for myasthenia gravis as well as for POTS. I take a lot more of it than most people around here (60mg every 2 1/2 hours!) It keeps me functioning. In terms of helping POTS, I found it better for me than midodrine, which I stopped after being very tachy taking the two together. Plenty of people here do take both. I feel it wearing off when I get POTSy again. I am puzzled that people here find benefit on really low doses, maybe it's enough for them with other POTS meds, but as mestinon is the only med I'm taking now for POTS, I really need to take it pretty often in order to be functional.Mestinon can be hard on the stomach. Always take with food. You may feel some tingling in your mouth, twitching of muscles. Please ask your doctor how much of that is considered safe.Don't know if the generic is as good as mestinon for POTS, people with myasthenia tend to feel that it is less effective and try to get the "real thing". Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted February 4, 2006 Report Share Posted February 4, 2006 I tried it for a few months and didn't notice any benifit. The only side effect I had was muscle twitching.I was on 120mg a day.Good LuckDayna Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 4, 2006 Report Share Posted February 4, 2006 HI,I had severe diarrhea and had to stop after a few days. Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted February 5, 2006 Author Report Share Posted February 5, 2006 Well, its been nearly six hours since i took my first dose of this new med and i have SEVERE nausea and have been puking and laying down all day. I am also have extreme weakness in my lower extremeties Not happy! Quote Link to comment Share on other sites More sharing options...
d4g7 Posted February 6, 2006 Report Share Posted February 6, 2006 I also had severe diarrhea, and had to stop after about a week.Although I did gain some benefit from it, the side effects were too great.However, from reading through these forums, I understand many people use it with great success. Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 6, 2006 Report Share Posted February 6, 2006 Hello,I'm sorry youre feeling so sick to your stomach on this! I had to start slow (1/4 of a 60 mg pill) and work up to the 60 mg dosage. Each time I actually got up to the full 60 mg's food just went "straight through" me. I did have some muscle twitching but it wasn't bad at all. I stayed on the highest dose my stomach could tolerate for about 3-4 weeks and didn't really notice any positive changes so I went off of it. From the positive results of many of this site it seems like it's worth a try if anyone is willing and able to try something new. I'm so sorry that youre so sick this evening...have you talked with you dr?Lisa Quote Link to comment Share on other sites More sharing options...
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