Phenytoin level

[sinfo]

I have last fit in 1999 and I am on 300 mg phenytoin. doctors advised me in July 2008 to stop the medicine but I am still taking 300 mg daily at night. Now my phenytoin level is 4.59 but doctors still pressing me to stop medicine. They told me that fit problem is cure fully and low phenytoin level does not effect you.

Second I am taking Phenytoing ER 300 mg daily. If I reduce madicine, I will take 200 mg which is not available in ER. What is the difference between ER and plain.
Please advise

 

[Dignan]

First I had a neuro tell me that the reference ranges are essentially meaningless, unless you are really high and toxic. He said they were developed arbitrarily based on what docs were prescribing patients years ago, so just because your level is considered low, doesn't mean you aren't still receiving a benefit in seizure prevention. Each person is different in how they respond to meds.

Secondly, when I took Dilantin extended release it came in 100 mg capsules and 30mg capsules. So, when I tapered down from 300mg, I went to 260mg for awhile, then 230mg, then 200, then 160, 130, and so on..

They should be able to prescribe you the 100 mg and 30 mg capsules, especially if the docs are telling you to taper off.

 

[Dolores]

I take 100mg tablets of Dilantin (brand-name for Phenytoin) which came out in the ER (extended release) formula a few years ago. I don't know about Phenytoin as my doctors told me to take only name-brand because generics do not have to have the same amount of the actual drug (I think it can vary from 80% to 120%). This is disastrous with Dilantin as it builds up in your system at non-linear rate. The therapeutic dosage is 10 to 20. Monitoring my levels is essential for me. I like to keep at a level 17.

My last seizure was in 1998 because my levels had dropped to 3 (was in an accident and even though I was being given "Dilantin" during my time in the hospital I think they used generics). I am still on Dilantin (alternating 300 & 400 mg) because an eeg still shows my brain is firing abnormally.

Maintaining my levels can be difficult because of all it interacts with. But I've been keeping track of my levels for many years including the dosage I'm on. So when I start to lose balance etc I know I'm probably overdosing, get a blood test and my doc & I talk about adjusting my levels.

You should be able to get Phenytoin ER in 100mg tablets. I know at one point I had Dilantin in 50mg tablets. That way you could come off it slowly.

The ER just means Extended Release - definition from Drugs.com: "Extended release means the pill is formulated so that the drug is released slowly over time. This has the advantage of taking pills less often. Also means that there may be fewer side effects as the levels of the of drug in the body are more consistent in extended release formulations."

 

[Revinrude]

Phenytoin is not good for you and that is why they want you to stop. It works good for the short term but has long term bad effects on your body so wean yourself off it.

 

[Dignan]

That is a bit too simple. All AEDs are bad for you over the long term. The newer ones just haven't been around as long as phenytoin/Dilantin to know how bad they will ultimately be over the very long term. The very well could end up being worse.

I had mild bone loss taking Dilantin for 15 years but otherwise felt fine, and now my life has been crap since they switched me off of it 3 years ago. I now take Keppra and am thinking of going back to Dilantin just so I can feel normal again.

If it is working for you, and side effects are manageable, think long and hard about switching because how each person reacts to a drug is different, and these new wonder drugs may not be a better bargain.