Hi All,

just wondering if any other parts of the world are experiencing a Mestinon shortage, well really I can't call it a shortage, because there seems to be none to be had here in western australia

My usually very excellent pharmacist can't get any, and the supplier, or manufacuterer says there won't be any until at least the 18th January.
So I have rung my neuro to see if he can get any for me from the big public hospital up there. Heres hoping he can get some for me.
Hope you are all doing better than me
Kate

Wow, that's terrible! I hope you can get some before you run out, if you haven't already. I hadn't heard about this. I'm curious as to how this could happen since there are generic versions and more than one manufacturer. There must be some kind of shortage of the raw materials or something. I'll keep my fingers crossed for you!

Yes I'm curious as to how they can run out, well I'm sure if they ran out of something importand that loads of people use, you would hear about it on the new, but lowly old mestinon, I think not.
Oh I havn't got any yet, but am not stressing, not worth it, the more I stress the worse my mg gets the more mestinon I need

Can you order from an International Pharmacy and get it shipped to you ? It only takes a week from the States. The Neuro told me it was in short supply but did not know it was this bad. It must be a horrible for everyone. This happened about 2 years ago with the Addisons Disease type of cortisone. There is only one brand of it in Aust., and they had no idea that it is what people with AD need to stay alive. They thought we could substitute it with Pred for eg. And we can't. I was told by the chemist one day when I went to get my script and I nearly fell over... he had no idea either that we need this type of cortisone exclusively. Eventually the Assoc was able to get special imports from UK and enough for desperate cases that needed it. Since then I always keep 6 months meds on hand at all times !!!!

I heard about a Mestinon shortage in Malta last year. I have to say I do have 3 bottles unopened in the house purely for this reason. As soon as I use the 2nd bottle of my unopened supply I order in 3 more. I shudder at the thought of not having mestinon. I just wouldn't function. Sorry Im probably contributing to the shortage.

As an alternative have you ever tried Neostigmine Bromide? I tried it before I was started on mestinon but I couldn't tolerate it. Awful cramps, vomitting and drooling. But if I didn't have mestinon I would take that even with those side effects.

Im wondering if the shortage is down to Mestinon being used to treat other conditions as well as MG now?

Love
Rach

You can contact Valeant directly - they hae reps for each drug.

http://www.valeant.com/about/contact.jsp

You may be able to get Mestinon syrup if the pills are in short supply and vice versa.

Is our government, or another, stocking up again like they did before the Gulf War?!!!

I hope you do not have to go without, Kate.

Annie

Actually my drug store ran out too, I went for my refill and only got part of it, I usually get 180 pills but I only got 63 pills and was told as soon as they can get it they will give me the rest. Thank goodness I have extra in the house I hope you get yours soon.

It is not listed yet on the ASHP drug shortages website.
I just looked.

Here is the link for future reference:
http://www.ashp.org/shortages

This shortage might just be a temp supply issue and not a real shortage.

This is terrible! I can only imagine life without Mestinon, I would probably not make it past three months since without it I can't chew, can't walk, can't see,can't talk,can't read.... the only thing I can still do without help is breath and my heart pounds with any small effort to move around while I lie in bed. I don't want to think about living like that because that is not living.

Now I realize I should keep an extra supply. I don't get extra Mestinon since it gets so hot here and the Mestinon does not store well in the heat (even in the winter our house gets hot in the afternoon since we try to heat it with the sunlight when possible). Is it fine to keep Mestinon in the refridgerator? If not, I will find the coldest place in our house. I am ready for a refill now and only have enough for another week. I better go get it today so I don't run out.

Kate I hope you find a solution.

This is bad, bad, bad!

I am so thankful for Mestinon, with Mestinon I am able be mostly normal for about 3 days out of every week. For the rest of my days I appear normal as long as I keep my efforts to a minimum.

I don't mean to add stress to this situation for you, but I am worried for all those other people who need Mestinon including myself. Without Mestinon I feel like it is a death sentence (for me) and I am sure I am not alone. I am glad now that I have trained myself to stay calm, because otherwise I would be in a panic right now and then my MG would get bad.

Okay, I just called in my Mestinon refill and they are able to refill it and I can pick it up this afternoon. Hopefully there is not a problem.

I hope you find a Mestinon source.

Most average drugstores only have one or 2 patients on Mestinon. So when you fill your RX, they will reorder it for next time. If the shortage is in your area, you might not see a problem until the next fill or 2 depending on how many you get.
I have worked in some stores that don't have ANY Mestinon. That means their customer base does not include an MG patient at all.

You might want to warn the pharmacy to try and get it sooner rather than later.