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...

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brade 10/25/2014

Hi,

In which dosage and how much and how many times a day do you take medicine? Have you achieved a positive result by taking Mestinon and 3,4 DAP together? We have to try many variations so as to get the best results. In which medicine combination have you obtained the best result?

Thank you.

ajax23 10/25/2014

I think it's very different for everyone. But currently I take at least 60 mg of mestion every 6 hours. Max is 120 every 4 but that's when I'm really bad. Im also doing ivig now and after that I feel I don't really need the mestion as much. I'm also on a super high does of prednisone (60mg once a day). I don't know how much the prednisone helps. Not sure what 3,4 dap is though.

limpnoodle 10/25/2014

3,4 Dap is 3,4 Diaminopyridine , and is used to treat LEMS (Lambert Eaton Myasthenic Syndrome) and some forms if congenital myasthenia.
I take it with 30 mg mestinon every two hours throughout the day.

Brade, do you have Lems or congenital myasthenia?

flutebell 10/25/2014

I'm only on 3x60mg mestinon per day and will likely have that increased soon. Brade, you have congenital MG, don't you? Does the 3,4 dap work for that? I thought I read that it worked for LEMS. We sure are all snowflakes!
Flutebell

limpnoodle 10/25/2014

There are a few types of congenital myasthenia and some can respond to 3,4 Dap.

annkemp 10/25/2014

When needed I take 60 of mestinon every 4 hours

brade 10/26/2014

Hi,

Thank you for your replies. I'm congenial Myasthenia Gravis.

brade 10/26/2014

I take 30 mg Mestinon 4 times a day.

GreenMarie 10/26/2014

180 mg Time span at 7 am and 7 pm plus 60 mg of shorter acting mestinon at 7 am and Q4W/A. I increase that to Q4H when taking antibiotics or in the hospital or taking any meds that competes.

I am still being evaluated tho. Daughter and I both are positive on SFEMG, negative on other testing and both have good results on pyridostigmine. She is also on cellcept.

limpnoodle 10/26/2014

I take the mestinon 30 mg 9x a day and a timespan at night. I also take dap nine times a day. That is what works for me. It would be easier to take it less often in larger doses, but my metabolism is such that I absorb the entire dose of both drugs rapidly, then I get side effects, almost like an overdose, but then it leaves my system rapidly, so I am left weak and unable to function till my next scheduled dose.
My neurologist pokes fun for the way I do this, but it keeps me on a more even keel without all the ups and downs.

jstlitlome 10/26/2014

I'm new at this MG thing, but I was on 60 mg mestonin every 2-3 hours. I just finished my first IVIG Friday and today I'm only taking 3. Tomorrow, I'll try 2. So far the IVIG has been great! Praying that it lasts a good long time!

Leslie

brade 10/27/2014

Hi GreenMarie,

You wrote that "mestinon at 7 am and Q4W/A". I did not get what it means Q4W/A. You start on 7 am with 180 mg timespan + 60 mg mestinon? Are you taking any after 12 am?

brade 10/27/2014

Hi limpnoodle,

Are you taking DAP and Mestinon together? Which dosage do you use DAP? 10 or 20mg? Does DAP has side effects?

Why do you prefer to take mestinon timespan 180 mg at night? Is there any difference between 60 mg mestinon except long duration?

deleted_user 10/27/2014

I agree think dosage is different for everyone depending on their situation. I was taking mestinon 30mg doasge per day along with prednisone 7.5mgs....I could no longer take mestinon due to BAD stomache problems that have occured from it and still suffer with...So now just taking prednisone 2.5mgs....I know alot of people have said same thing about mestinon, having the stomache issues, and found other alternatives...As i said my stomache issues will always exist now so bummed about that but at the time had no choice..been lucky so far have not had to find an alternative so heres hoping!! But I suffer dearly with the problems it has caused me.....Jacki

limpnoodle 10/27/2014

Yes, Brade, I take them together. The mestinon complements the dap and together they have a greater effect. I get the 10 mg Dap tablets. I take 10 at 6 am so I can get out of bed. Then usually break them and take five every two hours, but at noon and 6 pm I take 10 if I need it. Sometimes I have to take an extra 30 mg mestinon, if I have had a stressful event.
When I first started taking dap, my side effects were profuse sweating of hands and feet, with mild tingling of lips, hands and feet. Don't have any of these now, but it does tend to aggravate Reynauds if you have it.
I take timespan at night on the advice of my doctor because I was waking up all through the night to take mestinon. It holds me from midnight till six am.
Timespan is 180 mg, supposedly released in three increments of 60 mg each. I must have this much to get me through the night without dap.

dmccoyks 10/28/2014

I have found that I function best with 2 doses of 90mg in morning, then 60mg every 3/4 hrs

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