Epilepsy

[Krissy]

Found this story and wanted to pass it along. There are several quotes by doctors and by a spokeswoman from the FDA. It is a must read if you are on Dilantin.
http://www.pharmalot.com/2008/05/a-new-version-of-dilantin-is-giving-pfizer-fits/

[mhazel]

Hi .. I am new to this group. My husband age 59 has had epilepsy since abt age 13 and has been on Dilantin all this time. He always has had grand mal seizures if the Dilantin level dipped a little low. You know what those are like, something no one wants to have. Normally his seizures are temporal lobe. The last visit to his neurologist, it was mentioned that they wanted to take him off of Dilantin. Dr says with his age it is too risky for his bones now... the risk of breaks, etc. I wonder what drug can replace Dilantin when it comes to controlling the grand mal seizures? If he has them as he used to in the 1980's, he would have maybe 4 to 8 grand mal seizures in 24 hour and was totally wiped out for days. How can he work and even live a normal life with those? Does anyone know of a drug that compares to Dilantin for seizure control? Is there somewhere I can find statistics about these?

I know many of the drugs that my Ed has taken over the years are not good as far as side effects, but what abt falling down with seizures and having lots of them per month? Many dctors do not seem to know what it is life to live with seizures. The risk of side effects have to weigh against the quality of life and life with seizures or without as many seizures. Ed has worked (except for times off due to broken bones or surgeries to fix) all his life since age 19 and hopes to work until age 66.

I will read the article you have the link for with interest. Thank you.

[mhazel]

I read the article abt the New Dilantin. I remember noticing Ed's Dilantin looked different. We called and asked the pharmacy abt this and were assured, it was NOT generic and was the very same pill as before. Ed is one of the fortunate persons who had not been having problems with the new Dilantin.

Drug companies should be more considerate of the patients/users, and not just their profits. Ed participated in the Pregablin drug study. When the study ended those running the study tried to get Pfizer to give them a month or more supply to give to the patients. This way each patient would have a supply until they could secure the new drug as it came out. Some would not have insurance to cover the cost of the Lyrica and would need time to work something out so they could still manage to have the drug. The drug company said, "No". Pretty sad, I thought, after these people had offered to test this drug for them and would be users of said drug. Ed was fortunate since he worked he had health insurance that would cover at least 60% of the cost of the drug. He paid between $80 and $120 per month I believe when the drug was released and he was on his own to purchase it. Now he pays $73.00 a month for it. If he is ever without insurance that covers his prescriptions, I am not sure that we could afford to get all of his seizure medicines. I have always thought-- I will have to work the rest of my life just so he can have his medicines and have health insurance for that.