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 Fricke]

Hi, I was on mebaral and mesantoin for ages when I was younger....I was suprized it was even still on the market when someone mentioned it several years ago.  Mesantoin was dropped long ago too.   It was at least 20 years ago I dropped it so I am not clear (on many things since I kept no records). I believe I was on it because I had an allergic reaction to dilantin and we went with it then....but was put - eventually - on tegretol and was on it for well over 25 years (until it messed with my blood sodium levels suddenly last year)   I may have gone on Depakote also, I have a recollection of another drug and it having a drastic effect -spaced out stuff - and dropping it rather quickly before the tegretol.

  When my new neurologist asked me my history this year he shook his head when I mentioned the mebaral saying there were much more effective drugs now. He also mentioned that it was being discontinued.    Whenever I have dropped a drug I have been very cautious ....doing it even slower than the docs have told me to.....mostly because of bad experiences with dropping drugs as a young adult. 

I have had partials, both simple and complex. and grand mal (back then that is what they were called) or Tonic clonics that were secondarlily generalized....or caused/brought on by  a complex partial.

[jan ronk]

hi i just found out and the drugs experdation date is march so this is a problem since i am allergic to many drugs fillers and dyes.  the neurologist suggested that i slowly drop mebaral and increase mysoline a drug i hate,  i am also on dilantin and valium.  the company wished me luck and is sorry i may die from this.  BUT THEY HAVE A GREAT ART PROGRAM WITH THE EPILEPSY FOUNDATION!  lundbeck is the cause not the fda i have spoken intensly to both.  they said not enough customers. may they olose all their customers because if you take a drug from them and its wo rks for 38 years you never know when they will pull it out from under you.  side bar they were just in a long debate with the fda over a drug used in executions many people are mixing the two drugs up.  mebaral is not the drug used in executions it is nembral.

[TravisEd]

A lot of it IS the FDA.  Mebaral was pre-FDA, and as such didn't go through the testing drugs today are required to.  So IF a company wanted to continue to produce and offer it in the United States they would have to go through the ENTIRE testing process.  The problem, as many of you would guess, it cost.  It costs a crazy amount to do that, and the companies earn the expense back by having brand name (higher price) for the time before a generic can be developed and marketed.

I read about that in articles starting last summer.  A good friend of mine was on it for years.  They had to change him over.  At first he didn't believe me when I told him about it...then he checked with his doctor :(

--Travis

[jan ronk]

what did they change him over to and how was he on it?  i've been on it for 40+ years.  december 2011 is not the time to tell me.  spoke to the fda they claim it does not need to go through this process because it was grandfathered based on the success of the drug twice once in the 30's and once in the 60's.  what lundbeck tried to do was make a generic mephobarbital which would have required those standards and testing.  they knew this when they bought out ovarian the company that used to make it.  my doctor recieved a letter in summer asking if he thought this transition would work for me and he said no.  this is the only communication he recieved and it was walgreen's who sent it not either of the companies.  i hope your friend is doing well.  the stress tension and withdral and chaning to another drug is giving me breakthrough seizures after 30 years.  the thing that bothers me is that lundbeck is an orphan drug company.  i would not trust them or take a new drug from them because of this experience.  they are not repituable .  any drug they produce i would be afraid would be pulled off the market no matter how benifical  it is to the patient.  i also didn't like their remark that my life and those that were on it was not financially benefical compared to the money they could afford in lawsuits.  they said they they hoped i made it.  how cold can you get!  lundbeck equals irressibility in a field that can not afford it.  they admitted the missed my doctor and pharmacist.  they alsoo said it was a good drug.  is this confusing?

[Susan Grandfield]

Hi, I am the original poster--I still am looking for (and guess I won't find) a person who withdrew from the drug altogether after all of this time, as that is what my doctor thinks I should do. Right now I am doing a slow withdrawal (very slow), as withdrawing even a little bit quickly seems to make me very nervous. So my questions are two: 1) did anyone withdraw from this drug and how was it? 2) did anyone succeed in being seizure free after withdrawing from epilepsy drugs---also especially curious about whether age (like my current old age!) makes a difference either way. 

[jan ronk]

mebaral is the only one that worked for me in all the ones i tried.  i am having seizures as i withdraw but not like the status epilelticus i had once!  i am 65 years old and have been on it for 42 years along with mysoline (which was off the market and replaced with primodone which didn't work).  went back to mysoline when it came back on the market and seizures stopped.  i am on mebaral  mainstay, dilantin now in question, mysoline, and 2 mgs. of valium and had complete control until the mysoline incident.  lundbeck informed me that mebaral will be expired by the end of march.  no matter how slow you are trying you have to be done by the end of march.  withdrawing is not making me nervous; it is giving me small seizures and making me mad.  i believe this company's actions are irresponsible and illegal since there is no drug to replace this.  the younger and the older you are make a difference.  also this company is holding trials for new epileptic drugs. how inhumane and convient.  try a compound pharmacist and see if he can help you.  lundbeck should rethink it's position since some people were not notified.  i question the legality of this, and the safety as do two doctors and two pharmacist who are caring for me.  they can not believe this.  even my eno's nurse who has seizures says it's the talk of the hospital and his patients maybe because we are all senior citizens?  she says they don't know what to do.

[jan ronk]

DOES ANYBODY HEAR US?

[Susan Grandfield]

I think that the drug or drug you switch to depends on your form of epilepsy. If taking nothing doesn't work for me, my doctor definitely has in mind that I take Depakote. If I only have myoclonic seizures, I will not need to take anything.  I think maybe they haven't done enough studies on elderly people and epilepsy--I couldn't find much information about my particular form of epilepsy (JME) at my age, but did find one reference that it "needed to be studied" since they thought elderly people with JME might have less of a tendency to seizures compared to younger people. 

In other words, I am not going to find anyone who is doing what I am doing, even on the internet. And I am sure that the profit motive was what make Lundbeck not go for the FDA approval. This is the whole problem with the pharmaceutical industry today--things are done only for a profit motive. Though I suppose they have to consider whether to put in the resources when there are "better" drugs (to quote my neurologist) available. 

[jan ronk]

newer drugs designed by them to be used by patients that they will not make drugs that work for them any more.  that's not capitalism that's experimenting on desperate people.  i have seen people change drugs over the years forthe better ones only to add the old one on again.  these drugs are not as old and therefore do not have the history of Mebaral which is basically a good drug.  aspirin is a good druglet's stop making it because it's being used off label to prevent heartattacks.  where does the bs end.  all lundbeck had to do was file a form.  instead they are spending millions on developing new drugs????  where is the fda and medicare in this do they realize how expensive Lundbeck's actions can be to them?  bottom line:  IF ITS NOT BROKE DONT FIX IT....

[Steven Crowell]

I am 45 years old and have been on Mebaral since 1978 to control simple and complex partial seizures. I tried to wean myself off of Mebaral, once in the early 80’s, which resulted in a Grand Mal seizure so I resumed taking medication. Then in the early 2000's I tried switching over to Trileptal but it had side effects for me and it was ineffective, I again had a Grand Mal seizure and returned to taking mebaral. Lately my seizures occur only at night. I wake from sleep and have either simple to complex partial seizures that vary in intensity. I have an appointment with my Neurologist on 2/7 and was hoping that the experiences of the forum members would help me make the smoothest transition from Mebaral as possible. I wonder what my drug options are?  I have read that 75% of all Mebaral is converted to Phenobarbital within 24 hours of taking it. Has anyone here made a switch to Pheno or other drugs that have been effective? I want to be able to ask my doctor about all of my options. Thanks  

 

[Tony Murray]

I was on Mebaral for over 25 years. I was also on Dilantin. When I was a child I took both of them along with Diamox. After going several years with no seizures my childhood neurologist stopped the Diamox. Things continued fine with just the Mebaral and Dilantin. Then 10+ years later while getting my prescriptions from my regular physician I ran out of Mebaral. I decide to try and see if I could go seizure free with just the Dilantin. Several weeks later I had a major seizure. I had the dr. write a prescription for Mebaral. The seizures continued though. The dr. then recomended me to a neurologist. Things have gone down hill since.

[Steven Crowell]

Tony,

What meds did your doctor discuss as alternatives to Mebaral?