Protecting Epilepsy Patients

[BIGMAN131307]

Protecting Epilepsy Patients

Katie Morgan and her mom Janet spend a lot of quailty time together. The 28-year-old cannot wait to finally get her own driver's license. Diagnosed with epilespy when she was eight, her seizures have been the major road block to getting one.

Kathleen Morgan said, "You're a teenager, you're 16 and all your friends are getting your licenses and you're not, it's very disappointing."

In 2007, she had been seizure free for 14 months.

K. Morgan said, "I had the manual, I was studying and I was just so ready to take the test."

But about six months ago, the seizures came back.

K. Morgan said, "Yeah I was frustrated."

Frustrated, after realizing she received a refill of the generic form of Zonegran that was from a different manufacturer than the one she had been taking. Mom, Janet who is a nurse in the neurology department at Albany Med, pinpointed the problem quickly.

Janet Morgan said, "It was when the change went from one generic to another generic."

Most drugs out there have multiple generic substitutes, that are often much cheaper and just as effective as the brand name. In fact New York law requires the substitution to be made. Neurologist Dr. Michael Gruenthal says it's a lot different when you're talking about drugs that deal with epilepsy or other neurological conditions.

This can be causing us all problems. The doctors should all band together with us. Then we can take on the insurance companies & pharmacists.

[joan]

Last month when I went to pick up my sons lamictal, they handed me the generic version. I didnt accept it and demanded lamictal. They did give me lamictal and I have asked my Dr to be sure to write the script for no generics. Lamictal is working for us, for now, and Im not messing with it if I dont have to.

joan*

[Kansas Educator]

My neurologist checks "dispense as written" on the prescription form and told me that he will not prescribe the generic form of Depakote ER unless he has a patient whose financial situation makes it impossible for them to get the medication otherwise.

[Junebug]

Last month when I went to see my new Dr. I had told him that my seizures had gotten worse after switching to the gen. Lamictal. He told me that I am now the 10th patient he has who's seizures had gotten worse when switched to the gen. Lamictal and that Dr's have to file a report on their patients to the drug companies when patients have a negative reaction to the gen. Each report takes 45 min! If he was possibly even able to write each report for his 10 patients on the generic Lamictal it would take 450 min and that is just for the gen Lamictal, NOT for the other generic meds that his other patients aren't responding to. That is why there is little to no research on the generics NOT being "just as good" as the brand name drugs.

[brain]

Florida was the 1st State to push them
over the fence on this issue!



When they implied when the Doctors
write DAW - they MEANT DAW!

NOW the Florida Law requires them to
write it down as "Medically Necessary",
and no longer as DAW - oh well, they
write down "Medically Necessary"



Don't ask what the differences is, it
is a little aggravating for them to having
to write it down. But I'm on Brand Name
Zonegran and Brand Name Lamictal, but
everything else is generics.

Florida, due to Senior Population and due
to Strong Epilepsy Foundation push as well,
has literally pushed Pharmacology over the
fence! People, especially seniors, are just too
sensitive to too much generic availabilities and
the smallest change from one generic brand to
another generic brand can create havoc!

I was fine with Zonisamide, when there were
only but a few, then suddenly there was an
explosion of generics where I was getting all
sorts of side effects / seizures that I never had
before! Off to "Brand Land" I went - and it was
the best thing ever happened! I noticed a big
change by being on the Brand Name from the
earlier times from bouncing between 2 generics!

Now with Klonopin / Clonazepam - I had already
had a long time history with that and always was
able to tolerate either one, including the old version
of Dilantin / Phenytoin (not the new one, since I
cannot take Dilantin / Phenytoin anymore after being
on it for decades, due to the damages it had done to
me being on high titration for years) - and is able to
bounce back and forth between generic and brand
without any problems. Same way with Folate / Folic
Acid - no problems there.

But with Lamictal being new, there's too much risk
involved putting me on Lamotrigine - the generic, since
there are several out there; and the Brand Name is
working exceptionally. I have no idea if the CCF plans
on introducing Topamax 6 months from now.

GEE!

I had once been on 5 anti-epileptic drugs before, but
it was all mostly on 2 or 3, but now ...

It's building up again - *sigh*

Zonegran, Clonazepam (Klonopin), Lamictal with Folic Acid.
And is Topamax coming? That one is going to up up in
the air! The whole issue now is I can no longer handle
"high titrations" anymore, so says my Doctors. And its
very strange, even though it's low, but Dilantin is still
in my system, and I have not taken it for years!
Amazing!

[Shelley]

Sorry about the title of the page: http://bipolar.about.com/od/glossary...edhalflife.htm
but I think it may start explaining why Dilantin is still in your blood.

[skillefer]

My doc writes "No Generics!" on my prescription.

[brain]

Sorry about the title of the page: http://bipolar.about.com/od/glossary...edhalflife.htm
but I think it may start explaining why Dilantin is still in your blood.

Yes Shelley, but it's been since Nov 1999
since I've last taken Dilantin!

(This does not count for the temporary 10 days
until I saw an Epileptologist that my Cardiologist
put me on it due to the fact I had a major seizure
and I was already scheduled to see the Epileptologist
but was unable to see him sooner because he was
booked in multiple places)