I've just been diagnosed and was given the generic brand for mestinon. The first bottle from Global just disintegrated while I tried to cut them in half. The pharmacist ordered from a different company still the generic but they do not seem to be working very well. I have been on them since the first of June.

Has anyone had any experience with the brand working better than the generics?

Gabriella

Well, congrats on at least getting diagnosed.

All I can tell you is what my former neuro told me. He would not recommend anyone taking a generic version of Mestinon. Or worse, switching from the Valeant brand to a generic. Brands have to go through somewhat rigorous clinical trials but generics simply have to "copy" a formula. Just because they are all called Mestinon/Pyridostigmine Bromide, does not mean they are the same exact formula.

Also, humidity will contribute to those tablets falling apart. I use the syrup, so I don't have that problem. Don't ever put them in the fridge, though, thinking that will help. It only decreases the strength of the drug. Perhaps by putting a few in more containers, thereby lessening the amount of time the tablets are exposed to the air, might help.

I refuse to have a generic and, since I pay so much for insurance, I think I deserve to have a say in that!

Annie

Thanks Annie, I thought since I can't sleep I would see if I had any replies. Yes, I was diagnosed with multiple sclerosis 10 years ago after 25 years of symptoms before being sent to a neurologist. He did a MRI of my brain and saw all the classic lessions of MS hence "classic definite MS".

Then in April when I thought I was having an "exasperation" of MS I was sent to the ER so they could rule out a stoke. I had a different neurologist, a much younger neuro in the group to see me in the hospital. He suspected MG also and ordered the blood test which came back positive for the anti-bodies.

My first scrip for mestinon was filled with a generic without the desicant to prevent the tablet from crumbling. After getting on the internet (wonderful source of information) I found that the company (Global) making this generic has been having complaints for the past 2+ years.

I have a new scrip at the drugstore to pick up and I'm going to demand the brand as I am having no improvement with this drug. I'm having more symptoms than before including daily diarrhea after taking it. I read some of the older posts and found that individuals vary in the times and amounts they take.

My instructions on the bottle just say take 1 60mg tablet 4 times a day. I have also asked for the mestinon timespan version as my worst time is in the mornings and I think that might be because I am without any meds from the last one at 8pm. I'm also to get 3 days of IVIG this week. After speaking with the nurse I found she didn't know as much about the med as I do.

Gabriella

Hi Gabriella - welcome to forum.

I do take the generic made by Global and, for me, it has worked well. I have never had a bottle of pills that crumbled - and I do cut my tabs in half so I can take 30 mg doses.

I can not compare to the name brand (have never taken it) and my MG symptoms are relatively mild to begin with. My neuro would prefer me to be on the brand name for the reasons Annie noted. But my insurance won't cover the brand when a generic is available.

Good luck with finding the right doses - it takes some time (working with neuro always) to find what works best for you and your lifestyle.

Thanks Suev, If you don't mind me asking.....How long have you been dxd with MG and are you titrating the dosage upwards with the 30mg. How much do you take in a day?

I've found the side effects are confusing as I don't know if the diarrhea is from the tablets or something else. Also, I am still getting episodes where I have too much saliva and almost choke and can't swallow in the middle of the night which could be the MG or too much mestinon.

Anyone have any answers. I will be going back to see the neuro on the 17th so maybe he can help. It doesn't help to call as the nurses only know about MS and not MG. They have to e-mail the doctor with my questions and get back to me the next day or so.

Gabriella

Well since I last posted I called the insurance company and found out I can't afford the brand either. With my secondary covering drug costs they will not cover the cost if a generic is available. I would have to pay the difference and for one months supply it would be over $200. Generics are only $5.00.

Gabriella

Hi Gabriella,

I was dx'd in June 09 and started 15mg generic (mestinon) every 4 hours then. I had no side effects and some improvement of in symptoms. Gradually changed doses and frequencies until finally determining what really works best for me.

Now understand, my neuro has been on board, is supportive, and has 'blessed' this (unconventional) dosage. And I am considered 'very stable' - have never had swallowing or breathing issues and am lucky enough to respond extremely well to generic mestinon.

With that said, I take:

30mg every three hours that I am awake - - and none during sleep hours.

I add 30 mg if I am going to be doing physical activity (I golf and garden - but not in this heat!) - and spread the dose to 4 hours. And, there are times when I'm feeling terrific and I'll skip a dose in the middle of the day or spread out the frequency.

It has taken a long time of fiddling with dosages and me gaining an understanding how my body is signalling me what it needs...and there are still times when I wonder why I'm feeling better (or worse).

Try to be tolerant and work closely with your neuro. There is no magic. It takes time to find the right balance...and sometimes, even then it doesn't last.

Gabriella, I'm sorry that you can't afford the brand Mestinon. I can't really either but it's the only treatment I can have. I hope it does end up working for you. Talk to your neuro about starting at a lower dose and allowing your body to get used to it before building up to higher doses. And sometimes it may be smarter to take it a little more often or increase a dose during activity, as Sue mentioned.

More isn't necessarily better with Mestinon. Give yourself time to get used to it.

Hi Annie, Yes, I started with a lower dose of 1/2 tablet, then titrated up over a few weeks. I hope the doctor can get it straightened out as the nurse looking at the chart couldn't. I will be picking up the Timespan version of mestinon tomorrow for $20.00 and hope that will work out better for me.

My Government Employees Health Association insurance I kept when I had to retire on disability has been a very good insurance for pharmaceuticals until this year when they changed it drastically. Medicare and GEHA together totally covered the cost of the IVIG treatments which the first 5 days was $65,000 so I'm not complaining.

I'll see if the neurologist has better ideas as far as the mestinon is concerned. I can appeal it if he preauthorizes it because the generic is not working for me. I don't know what it would cost. I pay over $300 monthly for my insurance coverage out of a federal disability retirement income after working for 25 years.

Still not enough to cover an extra $200. in addition to all the other prescriptions I have to take.

Gabriella

i have been taking the brand for 36 yrs, just the past two yrs i strated generic from global, i find the genric works well for me since we have to pay for medication i figured i give it a go, i recomend though you have the pharmasit not open the bottle and give you the whole bottle unopend i found mine getting soft and crumble when they would transfer to another bottle, so now my pharmastist adds up my refills to match the 100 ( tablets-pills) that comes in the global container ( comes in a 100 tablet bottle).