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Lupus & Dilantin

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Old 01-25-2003, 01:02 PM   #1
Join Date: Jul 2002
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curse HB User
Question Lupus & Dilantin

Has anyone found that you got lupus because of dilantin? Did the lupus diminish once you were taken off dilantin?
How long did it take your Dr. to come to the conclusion that dilantin caused it & how long after taking dilantin was lupus suspected & in what way?


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Old 02-04-2003, 12:48 PM   #2
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Location: Bakersfield, California, USA
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Loretta HB User

Once you have lupus, I've never heard of it going away. I took Dilantin for many years (20) and now have fibromyalgia. After having been on Dilantin, I was put on Tegretol and have been on it for 14 years. Hmm, now that I think about it, the fibromyalgia has been in remission, more or less, for many years. I still feel pain in my muscles every now and then, but I don't require medication for it. In fact, it's way too strong. My doctor has never said anything about the medication having been the cause. He hasn't even diagnosed me with fibromyalgia. He just says I "sound" like I've got it. Who knows--you may be onto something. I'm going to ask my doctor what he thinks.

Old 02-05-2003, 02:40 AM   #3
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curse HB User

It would be interesting what your neuro says about it, although doctors never wanta be the scape goat. There's a lot about drug induced lupus in Medscape. Enough to convince me. I'm currently weaning off that dreaded dilantin that I've been on for 12+ yrs. My new neuro intends to get me off dilantin eventually, now that Keppra is doing a great job for me. I know these "special" doctors are just so busy, I decided to get off dilantin now rather than wait until I see him again.

Old 03-07-2003, 05:03 PM   #4
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stinner HB User

I have been on Dilantin for 15 years and I have never wanted to go off because when I do, I have sezuires within 2 months. As long as I am on Dilantin, I live a normal life. But now I have a positive ANA and a positive double strand DNA which points to Lupus -- though I have no symptoms (other than blood in my urine on 5 occasions in 3 years). So the doctors think it may be drug-induced Lupus from the Dilantin. I am afraid to change medications because I have never been on anything else that has worked!! But the doctors did say that once you go off the medication the Lupus symptoms should go away. Since I donít have any, I might wait to change medications until I do.

Good luck to you!

Old 03-07-2003, 06:37 PM   #5
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tooheys HB User

After reading these posts I did a bit of homework. Dilantin is probably the oldest type of anti-epileptic drug still around and most Drs are changing meds for their patients because of the side effects. They don't actually state Lupus but descibe it as a measley type rash and if it occurs then definitely replace meds with something else.


Old 04-07-2003, 08:39 AM   #6
Join Date: Apr 2003
Location: Fresno, CA USA
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candy27 HB User

My husband was diagnosed with Rheumatoid Arthritis in August 2002 after over a year and a half of joint problems. His RA factor (a blood marker for arthritis) was 104. God revealed to me the word Dilantin. My husband had been on Dilantin for 20 years. I got on the Internet and found posts of people on another epilepsy board who had joint problems, lupus, etc. We saw a rheumatologist who confirmed what we believed, that his RA was Dilantin-induced. Other doctors had not thought it possible, esp. his neurologist. Fortunately, it had been 9 years since his last seizure and he was able to go off Dilantin completely and has not had to go on another medication. The RA is resolving, it has been 4 mos. since he has been off, it started improving almost immediately. Unfortunately, just after starting weaning off the Dilantin other health problems hit, a long story. The part I am wondering about is his current problem of shortness of breath due to inflammation of the lungs. Our family doctor now believes the anti-bodies from the Dilantin which had attacked the joints are now attacking the lining of the lungs. Has anyone else heard of or experienced this?

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