Has anyone ever had their dilantin level go up quickly?

Posted by jdwandmew @jdwandmew, Oct 14, 2023

I've been on dilantin for epilepsy for 48 years. I've never had an issue with it. The blood levels hand always been within normal range. This year they went way up and I figured it was because of the neurotin I was taking for pain. I stopped taking it and the level came down from 36 to 25. Now he wants me to reduce the medicine to 200 mg a night instead of 300 mg. I'm very hesitant to do this as I haven't had a seizure in years. I can't imagine what made it jump out of range after 48 years. Has anyone else experienced this? I'm thinking I'll ignore my doctor (PCP) and keep taking 300 mg

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@jdwandmew
A Stanford University study says if on brand it shouldn't switched to generic and vice versa. If you take generic always refill using the same manufacturer. My doctor filled out insurance paperwork every year to get the Brand covered. Perhaps yours will do the same.
Jake

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@jakedduck1

@jdwandmew
A Stanford University study says if on brand it shouldn't switched to generic and vice versa. If you take generic always refill using the same manufacturer. My doctor filled out insurance paperwork every year to get the Brand covered. Perhaps yours will do the same.
Jake

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It's Medicare so it won't matter. They set the rules and they don't waver.

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@jdwandmew
I have Medicare and a supplement and my doctor got it covered but going forward it might be best to always use the same manufacturer.
Do you have straight Medicare or a Medicare C plan?
Good luck,
Jake

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@jakedduck1

@jdwandmew
I have Medicare and a supplement and my doctor got it covered but going forward it might be best to always use the same manufacturer.
Do you have straight Medicare or a Medicare C plan?
Good luck,
Jake

Jump to this post

Straight medicare but my drug plan is separate

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@jdwandmew

Straight medicare but my drug plan is separate

Jump to this post

I have taken Dilantin for 63 years and my blood level has always been in the therapeutic range between 10-20. I usually I'm around 12 or13, I had my blood drawn last week and it was30 I take 300 grams twice a day. My doctor also told me to reduce the nighttime med to 200 and redraw my blood again in 2 weeks. just remember you can overdose on Dilantin and it's no fun

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@bkon17
Dilantin can become unstable. My level was usually at 14 and I took 600 mg until it went toxic above 30. I took it for 20-25 years and we tried all sorts of changes like lowering the dose, taking so much every day, another day another amount, taking it every other day. Then every 2 days. We took so many different types of doses so many different ways. I couldn't believe that it never leveled out. I was having my blood level checked every day, but the doctor said that my Dilantin level has become unstable and I would have to change medicine which I did and as it turned out, it was for the best thing that ever happened to me. Carbitrol is a brand name time-release form of carbamazepine. After 45 years of daily to near daily seizures, they finally subsided. My own personal belief is that my seizures stopped because the medicine was time relase.
does the Dilantin completely control your seizures or do you have some occasionally? Do you by chance have peripheral neuropathy? I was taking Dilantin and phenobarbital which both are known to cause neuropathy, and so they believe that is the cause of my neuropathy. You've been on Dilantin
for an awfully long time. Have you had any problems from your long-term usage? Do you or have you ever taken other seizure medicine in addition to the Dilantin?
Take care,
Jake

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