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...
Cathi
Also, you definitely do not want to put this medication in the refrigerator. If you read the information on the bottle (or the supplemental information sheet that is usually provided, which describes mestinon's uses and indications) you will notice that it says to store in a dry place, away from heat and moisture, at 59-86 degrees Fahrenheit - this almost certainly is not the temperature of your refrigerator. Also, refrigerators tend to be moist rather than dry, so it's best to just find a dry cool place outside of your refrigerator to store your mestinon. You also don't want to keep your mestinon in the bathroom for this same reason.
:)
My response to mestinon is inconsistent at best. When IVIG is not working well mestinon seems to not work at all. Very frustrating. I'm afraid to not take it but find myself second guessing my dosage all the time.
"Although failure of patients to show clinical improvement may reflect underdosage, it can also be indicative of overdosage. As is true of all cholinergic drugs, overdosage of Pyridostigmine Bromide Tablets (Mestinon) may result in cholinergic crisis, a state characterized by increasing muscle weakness which, through involvement of the muscles of respiration, may lead to death. Myasthenic crisis due to an increase in the severity of the disease is also accompanied by extreme muscle weakness, and thus may be difficult to distinguish from cholinergic crisis on a symptomatic basis..."
That being said, I'm wondering if some individuals are actually taking too much mestinon, and therefore do not see an improvement in their symptoms and also may feel worse. I think of this especially with those individuals who have said that mestinon previously worked for them, and no longer works. I'm not saying that this will be true for everyone, but I wonder how many people this is in fact the case, and they may not know it.
As such, I would advise against adjusting your mestinon dosage if you're not responding well to it. Adjusting your dosage should be discussed and monitored by your neurologist just in case you do have an adverse reaction to a dosage increase...
My experience with mestinon has ranged from having symptoms that increase as the dose wears off to having symptoms that come and go regardless of dose. I take 60mg at 6am, 10am and 2pm and a time span at 6pm. I rarely change my dose but often wonder if increasing the dose would make a difference.
Getting back to the original topic of this thread, I did notice when I tried to carry a time span mestinon in my daily medication pill box that it seemed to be even more sensitive to humidity. It didn't crumble but changed color and had a very bitter taste (it's a bit yellow and bitter to start with).
Does your Timespan become discolored on a regular basis with your daily pill box? I read your previous posts and was slightly confused as to whether or not you were saying that you used the silica moisture absorber with your pill box, or if you were confident that the rubber washer was keeping all of the moisture out of the container. If your Timespan is changing color and taste when stored in your pill box, maybe you should consider keeping the silica in your pill box as well. It doesn't really matter though, because the discoloration, taste, and crumbled texture don't indicate a change in efficacy of the medication.
1. in the pill bottle with the dessicant (both mestinon and time span)
2. in a small, daily "pill box", the old fashioned variety. It's about an inch and a half circle and is divided into three small compartments. It's not sealed so only works for one day for mestinon and has to be kept in my purse and not in my pocket. I no longer carry time span in it because of the changes.
3. in the sealed container that attaches to my keychain. This one is only for extra doses so I'm never caught without mestinon.
This is what works for me and keeps me from missing a dose.