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...
Still don't have a viable theory about why when we are worse or tapering drugs our Mestinon starts to give us trouble at doses previously tolerated. Evidently acetylcholine has a very short half life and couldn't stick around long enough to get up to mischief.
My doc says although the stomach side effects of Mestinon are treatable, cramping and twitching with the Mestinon is another story. He gives me the go ahead to split doses if that is helping, so that is what I will continue to do under those circumstances--cut my dose in half and take it more often.
He gives patients a lot of leeway regarding the dosage and timing of the Mestinon. b.
My doc says although the stomach side effects of Mestinon are treatable, cramping and twitching with the Mestinon is another story. He gives me the go ahead to split doses if that is helping, so that is what I will continue to do under those circumstances--cut my dose in half and take it more often.
He gives patients a lot of leeway regarding the dosage and timing of the Mestinon. b.
Since I have reduced my mestinon intake, I haven't been getting the cramps or twitching. I take 120-150mg a day now. The only time I can exceed 180mg in a day now is if I take a 180mg timespan in the morning to last me until early evening or longer. I just have a lot of timespan left. I will not be reordering timespan anymore.
I get some twitching when I have been using the muscles for awhile, but I don't feel I currently twitch any more or less than I did before MG.
I think patients should have leeway on their dosing of mestinon, It can make a big difference.
TJ
When you are getting better like you are and start having side effects from your usual Mestinon dose, it probably means you do not need as much and decreasing it is the best and easiest way to get rid of the twitching and cramps.
Cutting your total daily dose when it is needed may get rid of the side effects, but will make the MG worse. I still don't know why you should have those symptoms when you need the medication the most, but don't have those symptoms at the same dose when you are doing well.
There are lots of things about MG I don't know, this is one of them. b.
Rhonda
I din't like the Mestinon Timespan because I, too have troubles when the Mestinon wears off and Timespan releases erratically and does not carry me through the night. So when that 180 mg drops, I have terrible cramps. Some people do fine with it, but not me.
If yur cramping is due to too little Mestinon in your system and you are out before the next dose, this is another situation in which splitting the dose and taking it more frequently might help. Or you may need a bigger dose. That is something to discuss with your neurologist. Some neurologists like to be sure you are not overdosing by having symptoms recur. That seems harsh and unnecessary. You might want to look in the Links Group under cramps and fasciculations for more information.
Good luck, cramping and fasciculations are no fun as many people on this board can attest. b.
I am going to show my lack of knowledge again. What is "half life"? My nuero said that Mestinon has a half life of about 4 hrs. I learned in the Navy when talking about radation that half life was when half the life was gone. At twice the half life 75% would be gone. and so on. Is this true in medicine? I did the math, but why bore you. I know that I have a scedule of 60 mg of Mestinon every 4 hrs and 30 mg at night. if I am 30 min. late I get MG symptons building up for about 30 to 45 min after I take the Mestinon. I know that in the morning is my hardest time. I got to bed with apx. 120 mg in my system and wake up with 30 mg. During the day I have about 100 mg at all times.
I am sorry folks, I love charts and grafts. Makes it easy for me to understand the causes and effects.
Maybe I have to much idle time on my hands.
Will
In medicine, half life means the same thing as in radiation. However, in medicine the half life of a drug depends on many variables, including whether or not it is taken with food, and how well absorbed by that individuals gut, how fast that particular person metabolizes it (there are slow and fast metabolizers) , how well the liver, kidney, and lungs are working (some drugs are metabolized by each and some more than one). So when you are told the half life of a drug that means the average half life of the drug given in the manner the manufacurer recommends to a healthy individual. That usually means it is tested with the person taking no other medication (that might interfere), on no strange diet, having no particular sensitivities to any of the "inert" compounds in the pill or liquid or capsule, and is not sick at the time the drug is administered.
Well, you can imagine that unless the drug has a wide safety margin, you are dealing with problems every time you prescribe a medication and always dealing with "it all depends." You wonder that we are able to put a pen to paper!
The table for Mestinon is in the Links Group under medication and myasthenia. You will note there is a great deal of variability and when you consider how the drug is being tested you realize you and the doctor only have an approximation of how this drug is going to function in your body. And every time you change one of the variables, the drug levels will change. Not a very comforting situation for someone who likes charts and grafts, unless you can do lots of blood levels under varying conditions :-) and chart it, but you can observe and chart your response and timing of your medication if you would like which is easier.
I'll give you the example I know best, which is very like yours as reported. I take 300-360 mg of a generic pyridostigmine a day (best always to take the same generic or the brand). I am probably pretty average when it comes to that table, 30 minutes for effect taken with food, peak effect at 2 hours and then noticable fall off by 3 1/2 hours. I take it every four hours because that is more convenient than every three or three and a half, and plan my most active part of the day around the peaks. In the beginning, I did set the alarm and take it in the middle of the night, but interrupted sleep caused other problems and not taking it during the night meant morning was difficult. I don't need it so much in the evening, but may have breathing problems at bedtime if I don't take it then. For things like that and unusual situations, it is nice to have been given liberty to fiddle with it.
So by 11 am, I have taken 3 of my doses, the other three I take on the four hour schedule. Those first three doses are taken 30 chewed, 30 chewed, 30 with breakfast, 30 chewed and 60 with a small lunch at 11. When I went on a hike, I split my 3:00 dose and took half of it early so that I wouldn't be climbing uphill during my usual drug let down time. So although the schedule is somewhat variable, the total dose stays the same and the blood levels stay relatively stable except for the early hours of the morning before I awaken and chew the first morning dose (to get it in my system faster). In winter the total dose is 300 because due to temperature and activity levels, I don't need as much. I hope that is not as clear as mud, but this is why good medicine is not a pure science and why it is so important to work with a neurologist that has a good feel for the disease, the medications, and the patient. All our medications are like this and this is the safest.
b. (one of the older kids)