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...
Welcome and be well.
'flare' Good luck:))
Are you taking something other than Mestinon (prednisone, Imuran, Cellcept..)? Mestinon works good for keeping us functional, but for many folks with MG that progresses, Mestinon will not be enough to keep us functional--and eventually it does not do much good. MG symptoms come from the destruction and blocking of our muscle receptors, something that Mestinon doesn't stop.
When a person changes more than one thing at a time (dose and brand type of Mestinon for instance), it is hard to pin down which causes the change or if it is something else altogether. Almost all the meds I take are generics and I haven't had problems with them.
Although generics must have the same dose of the actual drug in them, the rest of the pill (the inert part) can vary, and the actual doses of brand or generic can be up to 20% more or less than stated on the pill (normally is very close to the stated dose). So, there can be noticeable differences between batches of pills and between manufacturers.
The science on generics (biorequivalent) pills is interesting and includes the "nocebo effects, negative symptoms elicited by negative expectations from the patient." In research testing, some folks have expectations that generics will do worse than the advertised brand names and report that effect even though they are given the brand name but told it is a generic. Our minds can fool us quite easily!
for those who would like to read about generics -- wikipedia has info as well as the "science based medicine" website http://www.sciencebasedmedicine.org/index.php/generic-drugs-are-they-equivalent/
Good Luck!
Limpnoodle, my experience was that the Global tablets were softer and seemingly less effective. Mellywil, I also wondered whether I was having an MG flare, and I'm still wondering... And, Russ, I am not on other medication for MG at present. I have had to take prednisone a number of times in the past for asthma exacerbations and am hoping to put that off as long as I can. My symptoms are troublesome to me, but not that severe in comparison to what you and other people experience. I appreciate the information about the allowable variance in active ingredient--20% seems like a lot and could explain the difference that I've been dealing with between the two prescription fills. I also had not heard of the "nocebo" effect. I don't think that's in play because I was expecting the new bottle of Mestinon to do the same thing as the old and was surprised that it seemed more potent. And, my most recent dosage change was in response to the difference in effect between the two brands of generic Mestiono... I had less trouble switching brands on levothyroxine, which is supposed to be a greater concern.
So I will work with the dosage and hopefully find something that works for me, at least for a while!
I switched pharmacies, and apparently I'm the only one in my area with an rx so they order it fresh just for me. They supply Oceanside, and I swear it works better (could just be because it's fresh?). I saved a handful of Global pills, and any time I take one I get awful diarrhea, and barely get any tummy trouble with the Oceanside. So I'm sticking with Oceanside.
My pharmacist claims to have never heard of any moisture packet and seems baffled, so I save them from snack packs of coconut chips. I live on the water, so moisture is a big issue.
I find it interesting that Valeant makes Mestinon brand and owns Oceanside. I've wondered if the reason I find Oceanside to be better for me is because it's from the makers of real Mestinon. But I know nothing of the generic rx world so I only guess at that.
Also, for me Mestinon burns off like gasoline. The more I do the sooner it wears off. I would keep an eye on this type of behavior too. You may just be more sensitive to Mestinon in general and one brand over another.
I don't know much about the difference between brands, but I definitely notice a difference when my Mestinon gets exposed to the air (out here in NY, that's all it seems to take). It gets sticky and crumbly (the 60 mg) and the TimeSpan gets mottled - it gets darker yellow with light yellow spots. Because I don't want to waste it, I take it anyway, but I do notice a difference in its potency.
Hope this helps!
Laura