I have had at least 15 fractures on my limbs mainly, lost most of my teeth, have severe oestarthrititis, causing me alot of pain, I want to come off it but I am afraid to due to taking it for so long.
You should not use Dilantin if you are allergic to phenytoin, or if you have ever had:
liver problems caused by phenytoin;
an allergy to similar medicines such as ethotoin, fosDilantin, or meDilantin; or
if you currently take delavirdine (Rescriptor).
To make sure Dilantin is safe for you, tell your doctor if you have ever had:
heart problems;
liver disease;
diabetes;
depression;
suicidal thoughts or actions;
a vitamin D deficiency or any other condition that causes thinning of the bones;
porphyria (a genetic enzyme disorder that causes symptoms affecting the skin or nervous system); or
if you are of Asian ancestry (you may need a special blood test to determine your risk for having a skin reaction to phenytoin).
I FOUND THIS ON THE WEB, DO YOU TAKE A CALCIUM SUPPLEMENT? IT DESTROYS YOUR BONES, OVER A PERIOD OF TIME. ASK YOUR DOCTOR.
Babs, this is extremely common w/ Phenytoin. My new neurologist told me that there's been an ongoing effort for the last 30+ years because of the known side effects as a CA inhibitor. Docs tell you to take CA supplements but never said how much, supplements never worked & all my MDs never even thought of relating osteoporosis W/ Phenytoin.
Along with causing sever osteoporosis, it also has severely degraded my cartridge. In 1992 I broke T6 & Broke my neck in 2010 w/ herniated disc by simply stretching my neck & in 2023 when I torqued my shoulder doing exercises. I am currently dealing with issues bc of that. My last neurologist knew the issue, never said anything & increased dosages until I took myself off of it after 55 yrs in 2023. After spending 4 weeks in the hospital after crushing my chest & many fractured vertebrae, I confronted him, and he said he knew of the side effects. He retired 2 weeks later.
Get off of it & get on bone builders and / or CA supplements.
@A MyEpilepsyTeam Member - I have been taking Dilantin since May 2016. I started at 300 mg/dy but 5 months later I had 3 seizures in 4 hours while asleep (details from my wife). My dosage was increased to 400 mg/dy. I've been seizure free since Oct 2016.
But now (I turned 70 two wks ago), my Dilantin dose had to be reduced after blood tests showed its concentration got TOO HIGH (106; it was 91 before; ideal level is 71; sorry I can't cite correct dosage level units).
To help reduce the negative impact that Dilantin has on bone health, I was told by my epileptologist to take Ca (calcium, up to 1,500 mg/dy but NEVER higher) plus Vitamin D (up to 2,000 IU/dy). These 2 vitamins have an "intimate" relationship that helps bone degeneration caused by Dilantin.
Do you take any vitamins? If yes, do you take them at least 2 hours apart from taking Dilantin? This is necessary in order for the vitamins to work properly.
Last comment: because of my age, my Dilantin dosage has recently been decreased from 400 to 350 mg/dy. Blood tests showed my concentration levels reduced to the ideal level of 71.
Hope you have an epileptologist you can speak with about this. Sometimes, neurologists are not entirely aware of epilepsy drugs. Best of luck!
Linda, thanks. I used to take many supplements but cut back about a year ago. Now trying to get back at it. I recall hearing about boron. I currently take CA, Mg, Zn, D3.
But I'll check into adding the other.
I want to see my neurologist, I can't even get appointment due to a shortage of neurologists in the UK, I feel in the UK has you get older with epilepsy you don't get much support from GPS etc, you are left to suffer in silence, Thanks for your support 🙏
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