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Old 08-13-2011, 02:17 AM #11
Gabriella7 Gabriella7 is offline
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Default Found an answer!

The mestinon (brand or generic) needs to have a desicant in the bottle to absorb extra moisture and stored in a dry place. I also found that the generic form was causing me to have diarrhea and the last day I took it I had gone 10 times that day. Just a small amount but was concerned as it was a clay colored and almost a bright orange.

I goggled and found this could be either a liver or pancreas problem. Yesterday and today I switched to the time released brand mestinon Timespan (2 - 12 hours apart) and the stools are back to normal color and I'm not having diarrhea. I do plan on discussing this with my neuro next Wednesday but it really amazes me that this drug is so variable in how it affects different people. I think I was taking too much of the generic brand.

Anyway, I just got through 3 more days of the IVIG/Solumedrol/Benedryl combo in the infusion outpatient room. This is an ordeal in itself and has got my days and nights confused as I usually sleep most of the 4 hour infusion and then go straight to bed when I get home.

What a DIY project this is!

Gabriella
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Old 08-13-2011, 02:05 PM #12
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Default

Quote:
Originally Posted by Gabriella7 View Post
The mestinon (brand or generic) needs to have a desicant in the bottle to absorb extra moisture and stored in a dry place. I also found that the generic form was causing me to have diarrhea and the last day I took it I had gone 10 times that day. Just a small amount but was concerned as it was a clay colored and almost a bright orange.

I goggled and found this could be either a liver or pancreas problem. Yesterday and today I switched to the time released brand mestinon Timespan (2 - 12 hours apart) and the stools are back to normal color and I'm not having diarrhea. I do plan on discussing this with my neuro next Wednesday but it really amazes me that this drug is so variable in how it affects different people. I think I was taking too much of the generic brand.

Anyway, I just got through 3 more days of the IVIG/Solumedrol/Benedryl combo in the infusion outpatient room. This is an ordeal in itself and has got my days and nights confused as I usually sleep most of the 4 hour infusion and then go straight to bed when I get home.

What a DIY project this is!

Gabriella
yes that is true, always desicant in the bottles. have a beautiful day.
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Old 03-20-2012, 07:53 PM #13
Fandangoman Fandangoman is offline
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Default Generic vs brand Mestinon - a test

I have tested the generic (Pyridostigmine) vs brand Mestinon by taking the generic for a month then switching to the brand and I can tell a distinct difference. I have done this trial twice and one time I had to stop the generic and pay much more for the brand earlier than insurance allowed. After running out of brand several days ago before insurance would buy the brand today I was getting very weak with some breathing difficulty and an hour after I took my first 60 mg of brand Mestinon I am much better. I am an organic chemist and professor and I don't think that a drug synthesized and "purified" in a lab only God knows where would not have the purity of an American made drug that is more quality controlled. There was a independent quality control lab in India or run by an Indian doctor on 20/20 last week testing supplements and their results were ludicrous and dangerous as they missed arsenic and other toxins at high levels..
The extreme hygroscopic property, the tendency to absorb water, would decrease it's viabilty right off the shelf and if it is crumbling I would think it is not usable and most likely partly decomposed. My neurologist, a major researcher at a med school, complained to Global to no avail. I am convinced based on two personal trials the brand Mestinon is the much better safer choice, especially if you have mainly bulbar symptoms- breathing, speech, eating or vision issues.
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Old 03-20-2012, 10:29 PM #14
AnnieB3 AnnieB3 is offline
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Well, I do appreciate your trial but I must tell you that Mestinon is not necessarily made in the U.S. The syrup is made in Puerto Rico. My last batch of syrup tasted like pesticides. Not that I've ever tasted them but it tasted like they smell. I have reported that, plus sent samples back to Valeant. I might file a complaint with the FDA but I doubt they'd do squat.

Anyone know where they make the Mestinon brand pill by Valeant?

The generics don't go through the same rigorous clinical testing and, as you must know being a chemist, that they are not the same exact formulation.

Thanks for sharing your results with everyone. A lot of people have problems with the tablets crumbling, especially in the summer when "cool, dry places" are at a shortage. It's too bad that the brand Mestinon is not as inexpensive as the generic. That's a concern for a lot of people.

Take care.

Annie
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Old 03-23-2012, 11:57 PM #15
Gabriella7 Gabriella7 is offline
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Default Thanks

Thanks for bringing this back up to the first page. My memory has gotten so bad, I actually did not remember posting this here. Here's a little update...

The diarrhea got so bad my neuro told me to just stop the generic mestinon. I never got to try the brand with the exception of the time released. On top of everything going on the hospital pharmacy substitued the brand of IVIG I was getting and when I got the November dose I had some side effects.

The neuro skipped December and in January I got 3 days of Privigen IVIG and had a severe reaction. I first had vertigo on the last day of IVIG and then the diarrhea started as well as weakness. I was drinking plenty of water, gatorade, etc over the week but on Saturday night I passed out at 1:30 and did not wake up until my husband got up at 6:30.

We waited until Monday morning to go to the ER (should have gone sooner) and I had extremely low blood pressure, dehydration, and was confused. I was treated 1 day in the ER and admitted to the hospital on Tuesday and released on Wednesday.

My neuro has ordered the "Brand Necessary" Gammagard Liquid for my infusions and I have taken this with no problems in February. I have another one scheduled for next week. I am going to check into getting the "brand Mestinon" tablets as I understand this is what will give me my strength back.

Has anyone else here on IVIG infusions had any severe reactions to the other brands?

Gabriella
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