Adverse Reaction to Mestinon
 

Today I had a pretty bad reaction to Mestinon, and in restrospect it happened yesterday too but I didn't realize it was the Mestinon until I put two and two together today. I am supposed to take 60 mg every 6 hours.

I took it at 6 am and noon. After the noon dose both yesterday and today I got these symptoms:

Extremely weak and shaky all over, tremors, saliva to the point of almost drooling, unable to talk normally and feeling like my tongue was all swollen, tingling everywhere, feeling almost like little electric shocks going on everywhere, throat feeling like it's closing up, more effort to breathe, headache, nausea, dry heaves, trembling all over, barely able to walk, unable to use hands, jumping eyes

It took about four hours for the symptoms to abate. My neuro is moving to CA tomorrow and I need to find a new one so I'm really kind of hanging in the balance right now. Should I go back to every 8 hours or cut the pills in half? It was really scary and I'm afraid to take the 6o mg now.

Hi Tracy,
Are you taking the mestinon with food? I've had that type of reaction in the past a few times and it was because I took the mestinon on a empty stomach. Also, it could be that the 60mg is too much at one time for you. I don't want to tell you to take half the dosage because I am not your doctor. I sometimes take 1/2 pill instead of the full 60 mg BUT that is only because I have had MG for 16 years and am able to determine when I need to cut back on the dosage from time to time.

Did your Neuro refer you to another one before they moved?

Shari

Sounds a bit like my newbie to Mestinon story, but I could not move a muscle for about four hours. Once I was able to move a muscle, I called my HMO, and they told me to go straight to the ER. After they ran tests, I was told to reduce the Mestinon to 1/2 a pill and slowly increase back to 60mg to 3x a day.

It was hard for me to consider taking that medication, but eventually I did. Probably, about two months later and a lot of prayers.

My guess is that it was too much too soon, but you should have definitely gone to the hospital with those symptoms.

I agree with the other responses, too much. Try taking just one pill when it's time, and if you notice weakness still add a half or even a quarter. I've had Mg for almost two years, and it took me about a year to understand my bodies needs. Now I take my mestinon as needed, which is usually about 1/2 a pill an hour. I had gotten down to around 8 quarters a day (two pills total). But if I take a whole pill all at once it's too much too fast, I let my MG tell me how much to take. I'm also on 180mg timespan tablets 2x a day, so i don't crash as hard in between doses of the quick release. It helps give me a little leeway on when and how much quick release I need. Hope this helps and finds you strong and healthy.
Jessica

Thanks so much for your responses. I had gone to another neuro at the MDA clinic but it didn't go so well. I have an appt with a new one at UMass Medical Center in a month. The MDA clinic doc "consulted" for my neuro. I had no idea he was moving so fast; I knew it was coming though. He is coming back for appts in March and April for a week each month.

I took a 60 mg this morning. I am a little shaky and sweating a lot, but not the weakness and symptoms I had yesterday. I think I'll try breaking them in half from now on and see how that goes. I was going to space them out but it seems maybe taking less at once will be a good idea.

There are things that can affect dosage and dont think neuros necessarily know them all and we are individuals. For me it took more than a year to learn all the various things that affect mestinon and me. As I enter winter and my muscles do better just from the constant cold I would need to cut back. That first winter was very hard on mestinon generic as I did not know this. I had some bad reactions that include some of what you are saying. AT this point I think at one time or another I have had all of what you are experiencing. I started on 60mg every 6 hours. I dont take near that now. The gastro intestinal is so strong I cant tho my breathing could use it and legs. I have to take small doses more frequently.

That first winter the generic drug company changed the pill too! That caused even more problems. There was the thing with the tablets disintegrating and I believe that added a coating tho they never admitted such. I filled a complaint with them and the FDA and had to get off it going to non generic which to me in winter seemed stronger than the generic. STill does. The pill looked different. Same size and markings but it was now harder and kinda shiny so to me that seemed like an attempt to coat the pill to make it better but for me it meant a big bad reaction forcing me to totally stop while my neuro got the approval and ordered nongeneric.

I KNOW my body responds differently to mestinon when my vitamin D-hyperparthyroid mess is going on stronger and that progressed and got worse that first winter and has never gotten back to where it was prior to that till maybe now that I have a neuro that gets this issue as he has it himself so he is taking it very seriously. I will see now if my body goes back to a better place of tolerance as I take these vit D mega prescitption pills from my neuro.

I hope your neuro is understanding enough to check this all out with you. YOu know your body best.

Annie59:hug:

I am the 78-yr-old who has had mg 8 mo and is changing to a new neuro April 20. I have had terrible gastric symptoms for 2 weeks, plus extreme tiredness, plus drippy nose and earache from fluid (no infection) behind ear drum. I had been put on 1/2 to 1 tab 3 times a day. Three halves worked like a miracle at first. Then leg cramps and some abdominal discomfort, so pred was added: that I quit within 4 days. Tried to raise dose to full tabs, but soon went back to half tabs. Lately I tried 4 half tabs or 3 plus one whole. (Doctor doesn't give a d-.which I do.) I do not know if mestinon is cause of gastric problem or it is a result of PP-I I was left on for 4 years..Am trying herbal stuff for gastric and am thinking of heading back to half-tab doses, but after reading here wonder if a night-time half-tab should be added. mg is mostly occular now. Yes, I know you all are not doctors, but I can't get thru to any neuro for now.

I think maybe I'll try half tabs. I've been taking full tab in the morning and a full tab at nighttime and I think I could feel better if I took one during the day but I've been too scared to!

Dear Tracy,
My boss has this problem from last 6 years, he's been taking Mestinon from last 5 years, but he was taking mestinon without any other medicene.so he has the same reaction last year and also 2 months back,since you are also taking this medicene so is there any chance to cover this problem because he is taking losac to cover this Saliva problem, he has the same thing which you mention above.please enlighten me if there's way to reduce that, i ll be extremely thankful to you.

Regards

Fahad

If I take my 60 mg pill a bit too soon (less than 4 hours) I feel like there are electric shocks going through my tongue. I can also get severe diarrhea. If I don't take it by the 4 hour mark, I get too weak to function at work.