Mebaral Discontinued

[Susan Grandfield]

Hi Everyone,

I am 63 years old and have been taking Mebaral since 1984--before that I took Dilantin for 4 years. In 1980, I had a grand mal seizure, I had unknowingly been having myoclonic seizures since age 12--it is not the sort of thing you would bring up to anyone. It is somewhat assumed (but nobody observed) that I had absence seizures as a child. I was diagnosed with JME.

Now Mebaral is no longer available due to the actions of the FDA and the company producing it. My neurologist's first suggestion was that I try weaning off the drug entirely. I guess this is since I only had one grand mal seizure ever. I still have myoclonics, but don't feel they are a problem, since they're usually at night. If I want to continue a drug, he wants to give me Depakote. After reading about the drug, I am reluctant to take it. 

Right now I am just weaning off of the Mebaral.

But has anyone ever done this?? Have you gone off of drugs entirely while having JME? Most of the studies I read state that this cannot be done, although this study 

http://www.neurology.org/content/73/13/e64.full.pdf+html seems to suggest that it can be done. However, this study only had 24 people in it. 

I wish I had more information or could talk to others in the same situation

[Susan Grandfield]

So update to all. I saw a different neurologist (asked for a 2nd opinion) who thought the idea that I could quit taking drugs for epilepsy was ridiculous. That is because I still have myoclonic seizures, so I am not seizure free. She put me on Keppra immediately and told me to continue slowly tapering the Mebaral.  I haven't tried it yet. I am nervous. I am still tapering the Mebaral (now at 75 mg per day).  Also the doctor stopped short of reporting me to DMV, but advised me to stop driving for at least 3 months. 

So has anyone had experience with Keppra? Actually, loved Mebaral, but it didn't control my myoclonics. I just lived with them and they weren't an every day thing. I'm sure it controlled my chances of grand mal, though. 

[jan ronk]

the mebaral was expired march 31 get on the new program there was something wrong with that mebaral anyway they increased my mysoline

[Janet Grace]

Checking in. I have been on primidone since March. It seems to be working for me. SO FAR anyway! Anyone else on primidone? I was not tapered off Mebaral. So the first couple of weeks were hairy. Seem to be better now.

 

 

[jan ronk]

Having seizures again!  thank Lundbeck.  can't drive anymore happens in morning during night anytime so social life is shoot.  also be careful have read where an anticonvulsant is causing menigtis- no bactrial or viral-just a drug reaction.

[Grace]

Hello All
So sorry to hear of your seizures Jan. this is so wrong. I wish we could find a company that cared about people to manufctr for us.
I Started weaning off Mebaral and onto phenobarbital this week. Hairy so far. All sorts of side effects from headache to memory issues... And this s just a beginning. Several top docs I consulted said this was a logical choice as I am 49 and have been on Mebaral for 35 years (seizure free). They said it hould be easy so far its not, unfortunately. Tried keppra and lamictal years ago. Keppra gave me intolerable involuntary movements at a low dose and lamictal brought break thru auras and sleeplessness. I found out that Mebaral is manufactured in India under name mebrasil but my doc not comfortable with this as a supply. A lawyer relative said there is a mechanism for getting drugs from India. Wish we werent in this frustrating position. Especially when FDA made it pretty clear to me that they would have allowed Lundbeck to continue manufct w/o trials. Dollars over people...

[jan ronk]

Yes especially since they bought out ovation to produce this rare drug.  hit them where it hurts in the pocketbook.  don't buy their other drugs who knows when they'll stop making them and call your congressman.  they have become a monopoly and had a anti-trust suit against them in minnisota which they won they have become to big and are setting drug rules not following them.  they do not care about law suits and they are dangerous.  let's take lundbeck off the market.  or give us a nother explanation then it works but it is too old era

 

[Susan Grandfield]

Hi Grace and all,

I didn't have good luck with phenobarbital, even though it is supposed to be similar to Mebaral chemically or whatever. It made me feel really out of it--and I only took a small amount. One day I went to work after taking the phenobarb-slightly horrible, though I guess no one could really tell. I am still slowly weaning off of the Mebaral (now at 62.5 mg per day)--I think you feel it when you wean off too quickly. However, I have a different neurologist who insisted I try Keppra. I think the Keppra is going to work out, though it takes weeks to get used to it and to get through the initial side effects--mostly extreme drowsiness. However, on the positive side; on Mebaral, I was still having myoclonic seizures (no big thing--almost always at night) and Keppra seems to control those. So I am trying to hang with the Keppra. A shame about the Mebaral--it was just so easy to live with. Quite interesting that it is made in India. 

[Grace]

Tried Keppra years ago. Had involuntary movements on the smallest dose that made life/ work impossible. Glad it works for you. I wonder if anyone looked into a pharmacy that would compound Mebaral? I will make some inquiries.

[Anna Alan Adams]

Hey Guys,

So glad to hear some of you are doing well and to those of you who are not feeling well, Hang it there! A few months back we e-mailed about 7 different departments at TAJ Pharmaceuticals in India and recieved no reply back. I then had a friend who is from India call Taj pharmaceuticals and talk to a supervisor there and ask about Mebrasil. They said that they never started to manufacture it and that there were no plans to manufacture it in the future. They had no answer for us when asked why it was still up on their web site.  As far as we know it is not produced and was another dead end.

Grace, on the information page on our web site we explain why a compound pharmacy is unable to make mebaral. The main ingredient Mephobarbital is not available through any chemical supplier here in the US or anywhere else abroad that we have looked. There is one last lead we are following I will have to get the info and I will post it on here and our web site. We got word from a pharmacist in Europe about it being produced by a pharmaceutical company in Croatia. We have emailed them multiple times and have yet to get a reply. Calgor pharmacy in NY was unable to locate it anywhere in the world. Grace, if you get a chance please read the "information" section. If there is anything any one else finds out we would love to know. I just don't want to give anyone false hope. We have been let down so many times in our search.... 

Hang in there everyone.

Best Wishes,

     Anna

[Anna Alan Adams]

But, please if you find out anything different or get any leads we would love to know. I just wanted to share what we have found so far. Grace, I do hope you start to feel better soon. I know the transition can be really rough.

Anna Alan Adams said:

Hey Guys,

So glad to hear some of you are doing well and to those of you who are not feeling well, Hang it there! A few months back we e-mailed about 7 different departments at TAJ Pharmaceuticals in India and recieved no reply back. I then had a friend who is from India call Taj pharmaceuticals and talk to a supervisor there and ask about Mebrasil. They said that they never started to manufacture it and that there were no plans to manufacture it in the future. They had no answer for us when asked why it was still up on their web site.  As far as we know it is not produced and was another dead end.

Grace, on the information page on our web site we explain why a compound pharmacy is unable to make mebaral. The main ingredient Mephobarbital is not available through any chemical supplier here in the US or anywhere else abroad that we have looked. There is one last lead we are following I will have to get the info and I will post it on here and our web site. We got word from a pharmacist in Europe about it being produced by a pharmaceutical company in Croatia. We have emailed them multiple times and have yet to get a reply. Calgor pharmacy in NY was unable to locate it anywhere in the world. Grace, if you get a chance please read the "information" section. If there is anything any one else finds out we would love to know. I just don't want to give anyone false hope. We have been let down so many times in our search.... 

Hang in there everyone.

Best Wishes,

     Anna

[Grace]

Thanks for all info Anna. Will keep you posted.
G