[Maggiemayhem]

As mentioned in earlier posts, I was recently diagnosed with MG. This after searching for a dx for 8 years. Even though I'm seronegative, my neurologist confirmed a definitive dx of MG and put me on mestinon 60mg 3 times daily.
I recently saw a neuromuscular specialist and he put me on mestinon timespan,
180mg am and pm. BTW, he also confirmed the dx of MG, although he said I have only a mild case
I started this dosage last Monday and started having troubling symptoms today, Wednesday.
This afternoon my eyelids started to twitch. My cheeks, all around my lips, my chin and even my tongue started to twitch. My vision became blurry as well. This lasted for several hours. Earlier this evening, my right heel started to twitch then my right
foot started to cramp and spasm.
I've decided not to take the pm dose of mestinon, and now, a few hours later, all of the above symptoms are gone.
Are the above reactions normal for mestinon timespan?
I see my neurologist in 2 weeks but I would like to know if anyone else as had similar experiences.

[Bipedal Primate]

The symptoms you mentioned can be an indicator that your dose is too high. It is important to be very careful when taking mestinon because "too much" or "not enough" can both lead to a crisis. Confused yet ;-)

Everyone takes different amounts depending on their individual need. Sometimes, I take my 60mg and don't feel anything. Other days, I take 60mg and will have a very mild eye twitch or a little foot cramp. I just get up and move my body, and that uses up all the extra acetylcholine.

Our bodies very day to day. Some days we might not need much mestinon, while other days we need extra.

It has taken me a couple months to figure out the right dose for me :-)

For me, titrating up slowly worked out really well.

I took 60mg once per day every four hours with zero side effects. Then, I started taking 60mg twice a day, and then 3-x-day, still with zero side effects. Well, one POSITIVE side effect was that mestinon has cured my chronic constipation :-D ((LOL))

But, when I started taking the 80mg every 3 hours, I had a lot of eye twitching and terrible foot cramping. So, I went back down to 60mg, every 4 hours, 3-4 times per day, and this seems to be my sweet spot.

[Maggiemayhem]

Originally Posted by Bipedal Primate

The symptoms you mentioned can be an indicator that your dose is too high. It is important to be very careful when taking mestinon because "too much" or "not enough" can both lead to a crisis. Confused yet ;-)

Everyone takes different amounts depending on their individual need. Sometimes, I take my 60mg and don't feel anything. Other days, I take 60mg and will have a very mild eye twitch or a little foot cramp. I just get up and move my body, and that uses up all the extra acetylcholine.

Our bodies very day to day. Some days we might not need much mestinon, while other days we need extra.

It has taken me a couple months to figure out the right dose for me :-)

For me, titrating up slowly worked out really well.

I took 60mg once per day every four hours with zero side effects. Then, I started taking 60mg twice a day, and then 3-x-day, still with zero side effects. Well, one POSITIVE side effect was that mestinon has cured my chronic constipation :-D ((LOL))

But, when I started taking the 80mg every 3 hours, I had a lot of eye twitching and terrible foot cramping. So, I went back down to 60mg, every 4 hours, 3-4 times per day, and this seems to be my sweet spot.

Thanks. That makes a lot of sense.
I didn't take the pm dose and the twitching, spasms and cramping are gone.
I think I actually did better on the 60mg 3 x daily, sometimes 4 x daily according to need. However, I have a 3 month supply of this very expensive drug so I'll probably continue, but just the am dose.
This disease is very frustrating. It seems that every day something new pops up
I'm sure glad I found this forum, I've been given some very helpful advice on various issues
Thanks again, Jan

[neutro]

Hi Jan,
You could also try to cut the 180 mg Timespan pill in two and take this “new“ 90 mg Timespan am and pm.
Cutting the pill in two is allowed and possible as, at least on my Timespan, each pill is grooved in the middle. It is however not recommended to split more than once.
I fully agree with the approach described by bipedal primate: back and forth with a cautious scheme.
Good luck,
Maurice.

[neutro]

One more thing, it is not responsible to switch from Mestinon to Timespan without at least one good reason, for example: difficulties to swallow in the morning due to long night period without medication. Or an other example: type of work which makes it difficult to take Mestinon pills regularly...
It is also not responsible on a financial basis...
Maurice.

[Maggiemayhem]

Originally Posted by neutro

One more thing, it is not responsible to switch from Mestinon to Timespan without at least one good reason, for example: difficulties to swallow in the morning due to long night period without medication. Or an other example: type of work which makes it difficult to take Mestinon pills regularly...
It is also not responsible on a financial basis...
Maurice.

Hi Maurice and thank you for your response. I will try cutting the timespan In half
I didn't realize I could do this. I do have swallowing issues as well as vocal issues in the am and that is probably why neuromuscular dr recommended the
switch to timespan
Today, I am "twitch" free, so I'm sure I simply had too much mestinon in my system.
Thanks again, Jan

[Juanitad]

I take the Timespan at night so it doesn't conflict with the daytime dosage. If you are continuing to take your 60 mg dosage during the day as well as Timespan 180, you are basically doubling up on the mestinon. The TS is supposed to be the equivalent of 3-60 mg tablets spread out over 12 hours. You might try taking the timespan when you go to bed so you don't have the weakness in the morning and taking your normal dosage of 60 mg during the day an see if that works for you. Sounds like it might work better. Good luck!

Juanita

[Maggiemayhem]

Originally Posted by Juanitad

I take the Timespan at night so it doesn't conflict with the daytime dosage. If you are continuing to take your 60 mg dosage during the day as well as Timespan 180, you are basically doubling up on the mestinon. The TS is supposed to be the equivalent of 3-60 mg tablets spread out over 12 hours. You might try taking the timespan when you go to bed so you don't have the weakness in the morning and taking your normal dosage of 60 mg during the day an see if that works for you. Sounds like it might work better. Good luck!

Juanita

Thanks Juanita. I'm going to give that a try. However, I think I'll follow Maurice's advice as well and cut the night time timespan in half.
Looks like it's going to take trial and error to find the correct dosage
Jan

[Bipedal Primate]

Please keep us updated on your Mestinon "adventures." I learn so much reading about what works and doesn't work from others! :-)

I haven't tried the 180mg Timespan yet. But am super excited and *hopeful* that it works just as well, if not better, than my 60mg 3 x day.

For me, remembering to take a pill every freaking 4 hours during the day is such a PITA :-/

[Juanitad]

When I started on the Timespan, I was advised not to break the pill even though it has a line on it. Apparently they use wax combined with the mestinon and the medication isn't always even spread throughout the pill. As a result, it may not work the same each time you take it. Just a thought.

Bipedal Primate - I tried taking the TS in the morning instead of 60 mg tablets 3 times per day, but it just didn't work for me. I think the problem was that I am a lot more active during the day and the unevenness of the release of the TS didn't cover my activities during the day - but hey, it might work for you! We are all unique!
Juanita