Hi i am new here but i need to just vent for a little bit. I have been on dilantin for almost 6 years now and till the present i have had ok luck with it. But the last month it doesnt want to stay in my system, i have had 3 blood checks in the last month and my count as been none existant. I take my medicines religiously and my wife even gets them laid out for me. I take 400mg in the morning and 400 mg in the evening. My last three counts have been anywhere from 2 - all the way down to just .6. My doc refuses to change my medicine and even made me take my pills to another pharmacy and have them count them and check to make sure they were the right pills. Which they were. I am getting really upset because i feel like they essentially saying i am lying to them and not taking my pills, when that is the furthest from the truth. I know what happens when i dont take my meds and i dont enjoy having seizures so i take it religously. They basically told me that there is no possible way that my count should be that low and the pharmacy and the doc decided to take me off name brand dilantin and switch me to the generic. I dont know what difference they think that will make because arent they basically the exact thing??? i am just so confused and so depressed right now. I dont like being made feel like i am crazy. And thats exactly how the doc is making me feel. I mean i even heard the pharmacy that he sent me to asking the docs nurse if they had talked to my wife to make sure i was taking them. and he asked her that with me standing right there by him! how do they think that makes me feel?? I am guessing with all the people that take the drug dilantin that i am not the only person that has their level drop. if you have any suggestions let me know. Thanks for letting me vent.:confused:

800/day and your levels were at 2; now reading 0.6!!! YIKES! Dilantin levels "recomended range" is 10-20. For some it's lower, others higher. Much of a reason for concern.

Generic in my case caused irratic levels, lower than normal. caused seizures. caused me to visit the ER a few times and get pumped up with dilantin by IV.

I'd HIGHLY suggest sticking with brand name ONLY if your Doc is keeping you on that medication. It DOES make a difference!!! By The Way, Dr's DO have to follow your (the patients) requests, even if they don't like it. If you so desire, ask your Dr to write out a script for Dilantin saying "Do Not Substitute". That way you will get brand name only if you wish to.

One generic I was on of Dilantin/Phenytoin was one side of the capsul was white, the other was purple (lavender?). The generic had a SOLID PILL inside, not powder like brand name Dilantin's Kapseal. (for a reference)

--Travis

I should add this on.

The opposite end of dilantin levels, toxic side (too high of levels). Effects can be sensitivity to light and sound, balance, "drunk like" effects.

I had those when the hospital pumped me with a megadose by IV. The hospital ambient noise sounded like it was on an amplifer, the lights acted like there were spotlights my eyes were very sensitive. The "night" lighting setting seemed "normal" to my eyes. Take into account They pumped me up with over 2000mg by IV in about an hour and I only took 350mg/DAY.

Mental effects (thinking) were clear and did not seem to be inhibited as it can be with other medications.

Finding out the sideFX of meds is not something we care to, but having been there done that Im more than happy to inform and NOT have others go through the same I did.

On a different occation, due to body weight loss (caused by a medication that didn't work for me) it shot Dilantin up to 25 (blood test) I think it was. About 8 above my normal reading. My balance was shot, blury vision/double vision, I had to walk with a CANE or lean on the walls my balance was non existant. Dropping the 50mg after checking levels took away the problems (Dr's orders). Also the new med that didn't work out had been removed and I gained back the weight lost; took a few months.
Substantial weight drop was the cause of that toxicity.

--Travis

the doc decided to take me off name brand dilantin and switch me to the generic. I dont know what difference they think that will make because arent they basically the exact thing???

No, they're actually not the same thing. When I was on Dilantin, they first put me on the generic, and my blood levels were nonexistant. So my doctior switched me to the brand name, because he said the amount of actual meds (or the concentration, or something like that) in generic vs. brand name is usually different. The brand name was a little better, but he couldn't get the levels in my blood where he wanted them to be, so I switched to Tegretol and then eventually added Keppra.

I say, if your doc doesn't believe you, switch to a new doctor. I'm pretty sure it's possible for your body to sometimes build an immunity to certain meds after a certain amount of time (like what happens with antibiotics or pain relievers), which is what may have happened, and you need to have your meds changed.

Yeah, you have to have a doc who believes you. Generics of dilantin are usually not recommended (not sure why they even make them- even I, on SSD and no prescription coverage- wouldn't buy the generic- I'd go without something else first, if I was on Dilantin). I can imagine the frustration of knowing you're taking what's prescribed and having messed up levels. Is it your PCP or neuro who's doubting you? Whoever it is, I'd tell them that their lack of trust is sending you elsewhere, since YOU know you're taking what's been prescribed. I'd be upset, also.

I was on 400 mg of Dilantin for 16 years and suddenly it just stopped being effective. I wasn't the best at getting my blood level checked and when I started experiencing auras I did. my doctor determined it was low so she boosted my dosage to 600 mg. Thereafter, I noticed that whenever I would exert myself I would start shaking (I was washing my car once and this happened), also my gums would bleed. She said that it was time for me to get off the dilantin and switch to something else. It was no longer working for me. That's when I switched to Topamax. It's really too bad because when I was on Dilantin, aside from the swollen gums, it had minimal side effects and the Topamax (per my handle) has really made my life hell.

I was on 400 mg of Dilantin for 16 years and suddenly it just stopped being effective. I wasn't the best at getting my blood level checked and when I started experiencing auras I did. my doctor determined it was low so she boosted my dosage to 600 mg. Thereafter, I noticed that whenever I would exert myself I would start shaking (I was washing my car once and this happened), also my gums would bleed. She said that it was time for me to get off the dilantin and switch to something else. It was no longer working for me. That's when I switched to Topamax. It's really too bad because when I was on Dilantin, aside from the swollen gums, it had minimal side effects and the Topamax (per my handle) has really made my life hell.

did you ever investigate the batch of dilantin that you had.
I also recently had a fall in my dilantin level from 16-20 trough to
10(peak). Using the same dose, I switched lots and my level is now 19 to 20. No one can explain it so I sent the pills back to pfizer and called the fda.
I have been using this drug since 1991 and always had good levels unless my dose was lowered. Did you know that dilantin was recalled about 8 to 12 times in the 90's for absorption problems. Its worth looking into.

I was on 400 mg of Dilantin for 16 years and suddenly it just stopped being effective. I wasn't the best at getting my blood level checked and when I started experiencing auras I did. my doctor determined it was low so she boosted my dosage to 600 mg. Thereafter, I noticed that whenever I would exert myself I would start shaking (I was washing my car once and this happened), also my gums would bleed. She said that it was time for me to get off the dilantin and switch to something else. It was no longer working for me. That's when I switched to Topamax. It's really too bad because when I was on Dilantin, aside from the swollen gums, it had minimal side effects and the Topamax (per my handle) has really made my life hell.

When you say that dilantin stopped being effective, do you mean that your blood levels were within your therapeutic range and it wasn't effective,or did the level drop.
If it dropped and you did not change lifestyle habits etc. I'd check the pills.
call the fda and pfizer.

I will post on this from a small bit I know.

A patient I know of (through the patients family) medications would work for a duration of time then cease to work. Be it psychologically or physically for the reasons the meds would cease to work. This happened med after med from the patients earlier years. So I tend to discard the psych reasoning.

As for Topa and Dilantin, there IS a minor issue between the two. Dr's often will want you off Dilantin if they are putting you on Topamax and will do a cross patttern (increase/decrease) to avoid issues once Topa reaches your initial dose What the interactions are I can't remember, it may only be levels in the bloodstream. However if thats correct, thats enough to throw people into seizures. (I need to find me med book so I can post factual researched data word for word and or numbers!)

--Travis

I was on 400 mg/ day for 16 years and I started to get auras so my neuro did a blood level and it wasn't reading so she upped my dosage to 700 mg. At this point, I started shaking from the dilantin whenever I'd exert myself (I remember being at the car wash and I started shaking from holding the hose), I couldn't do yoga, my gums would bleed profusely and then my neuro did a blood level and said it was still too low and that it was time to switch meds.

I wanted to go on Keppra. My mother was having health issues and I had spoken to her nuero in Florida and she had talked to me about Keppra. Ir emember thinking at the time that if I were to switch meds I would go on Keppra. I talked to my neuro about Keppra but she was relentless about her topamax. She used the whole "weight loss" manipulation (I was slightly overweight but very insecure and she worked that angle), she also used the whole "we will give you the topamax, keppra is very expensive and you will have a copay". I was very stupid at the time and it was HUGE mistake that I will forever regret. The topamax was a big problem for me that caused a downward spiral in my life. But...ya live, ya learn! Last time I will EVER trust my doctor without doing my homework first.

Now I'm on Keppra and weaning off the max and the two year fog from the topamax is starting to lift. I sure do miss the simple days of dilantin, though.

Hi
just checking to see if you had any more information as to why your dilantin levels are so low. Did you think about investigating the pills? I haven't heard anything from Pzifer yet. Its the only logical explanation to me.
hope this finds you well.

I started taking the generic form of dilantin like the doctor insisted i should and he checked my counts like 4 days after and they went up to 18, however the generic form makes me feel awful, my head was pounding, i was so dizzy i could barely stand, and my stomach was awful. I told the doc and he insisted i probabley had a lil bit of the flu, so i took the med he gave me for the supposed "flu" and kept taking the generic form, I was still feeling awful a week later. So i called the doc and he still insisted i take the generic. I got mad and looked in my medicine cabinet because i always keep a backup set of med incase of emergencies and i had a bottle of my name brand dilantin in there. So with out consulting the doc i just quit taking the generic and started taking my old form of name brand again. He has tested my levels 3 times since and they are staying at 13-15 range. So i have just been taking the name brand without the doc knowing. I am really angry at the doc. Altho he did send in the one bottle of the Dilantin that he kept when i started having the problems. But i havent gotten any results to if it was ok or not. Now my doc is on a Convenient 2 month vacation so i have to see a new guy to get refills. Hopefully he will be more helpful then my regular doc that i have been seeing. Anyway thats my update and since i quit taking the generic all the other symptoms have now left and i am doing ok for me anyway. I have a lot of other medical problems like high blood pressure and fibromyalgia, and alot of anxiety. So we will see what the doc filling in for my regular has to say next week when i go to have my refills done.

I started taking the generic form of dilantin like the doctor insisted i should and he checked my counts like 4 days after and they went up to 18, however the generic form makes me feel awful, my head was pounding, i was so dizzy i could barely stand, and my stomach was awful. I told the doc and he insisted i probabley had a lil bit of the flu, so i took the med he gave me for the supposed "flu" and kept taking the generic form, I was still feeling awful a week later. So i called the doc and he still insisted i take the generic. I got mad and looked in my medicine cabinet because i always keep a backup set of med incase of emergencies and i had a bottle of my name brand dilantin in there. So with out consulting the doc i just quit taking the generic and started taking my old form of name brand again. He has tested my levels 3 times since and they are staying at 13-15 range. So i have just been taking the name brand without the doc knowing. I am really angry at the doc. Altho he did send in the one bottle of the Dilantin that he kept when i started having the problems. But i havent gotten any results to if it was ok or not. Now my doc is on a Convenient 2 month vacation so i have to see a new guy to get refills. Hopefully he will be more helpful then my regular doc that i have been seeing. Anyway thats my update and since i quit taking the generic all the other symptoms have now left and i am doing ok for me anyway. I have a lot of other medical problems like high blood pressure and fibromyalgia, and alot of anxiety. So we will see what the doc filling in for my regular has to say next week when i go to have my refills done.

Hi My problem was a little different. I had been taking the parke davis dilantin and my level dropped. When I switch lot numbers, the level is now within my range. I haven't heard back from the company yet either. My docter believes me after all of the evidence that I showed him about Warner Lambert recalls of dilantin in the 90's.
Im glad that you found out the problem and are feeling better. I'd have the docter call in a prescripton from his vacation spot if I were you.

[QUOTE=Travis from MN;

One generic I was on of Dilantin/Phenytoin was one side of the capsul was white, the other was purple (lavender?). The generic had a SOLID PILL inside, not powder like brand name Dilantin's Kapseal. (for a reference)

--Travis[/QUOTE]

So that is why the generic (phenytoin) takes longer to absorb into the blood stream. I didn't know it had a solid pill inside, but my 1st doctor would never put me on the generic either. He has since retired, and I have been seeing another doctor now for about 8 years. He knows I take Dilantin, but a few times he tried to write me a prescription for phenytoin. I finally had to tell him and his nurse that I would ONLY take dilantin. I've never been satisfied with this doctor, or maybe it's the office complex itself. He is in with 20+ other doctors, each specializing in different illnesses/diseases and only a handful of office workers. There is always a huge turnover rate at this office, and it's no wonder. The doctors are so busy that they don't take the time to know their patients.

What I can't understand, is if these doctors know the generic is not as good, then why do they prescribe them?? Must be the perks they get from the pharmaceutical companies.

Donna,

Usually it is cost. Generic is slightly cheaper for HMO's and insurers so the policies would rather take those over brand name unless it states DO NOT SUBSTITUTE on the slip from the Doc.

They don't have to face the consequences of the medication like we do, so what does it matter to people in offices somewhere that will never see us.

It's amazing what we learn over the years just being on our medications. My Dr (previous) was aware of issues with generic and brand name Dilantin and switched me back to brand name.

Now being off it for years, It's dealing with my new doc (see TegXR thread). I'm having to act like a parent hawk over it's child... just for myself!!!

--Travis

I finally got upset enough that i changed my doctor actually changed 3 of my doctors. And my new doctor told me something i didnt know, the depression med symbiax and dilantin zero each other out which is why my dilantin levels were practically zero. Since he changed my meds i am feeling alot better. Now I am double checking everything and making sure i dont take something that zero's something else out!!!