Hi all.

Really need your input here.

Alan just came home from the Neurologist and he had been given a prescription for generic Trileptal which he filled.

So he walks in the door and says "I will start taking Trileptal".

I immediately said "well, that's an anti-seizure drug and you know what happened when you went on Neurontin, and Lyrica, you got DEATHLY sick. He had gotten fevers, bad body aches (like a flu). And just to make sure it was the Neurontin, we waited a few days, he took it again, and the same thing happened.

And just to remind you all, when Alan took Celebrex, he was hospitalized with a BODY RASH, his face blew up and I read up and that's Steven Johnson's syndrome right? And he was told to never take Celebrex or any Sulfa drugs again as long as he lived.

So I just went online and read about Trileptal and found that in some cases it results in Steven Johnson Syndrome (some people have had to be hospitalized).

Now when the neurologist (I wasn't there by the way), when she prescribed this Trileptal for him, he told her about the Neurontin and Lyrica reactions (but he didn't tell her about Celebrex) because he doesn't know to tell her this.

She said "This is not like Neurontin or Lyrica, you can try this"

So I just want to know, SHOULD HE TRY THIS PILL.

The bottle says: "OXCARBAZEPINE 150"

I know there are risks with any drugs, but look what happened to him when he took the Celebrex and he had this big rash and his face blew up, and when he took Neurontin or Lyrica he got so sick.

I would appreciate any information.

I told him "you are not taking ANYTHING, until I run this by the people at Neurotalk"

Thanks much

Melody

Hard to predict an allergic reaction.

So what is this supposed to do for him? Is it for pain?

Yes, she prescribed it for neuropathy.

Melody

Hey Mel how are you?
Anyhow my pain doctor was going to try this for me and the pain if neurontin did not work which it is not but have not tried the trileptal.
I am not sure about side effects though. Is that a low does to start off with? If not maybe talking to the doctor about starting slower in case of similar happening. I can understand the fear about similar happening. I rarely here of people on this med for pain so it is interesting your husband was suggested it. My mom is on this med by her psychiatrist and finds it helpful. I know that is different but in the start all she had as side effects was she would feel groggy and could not drive for a few hours after taking it.
Sorry not more help. Hope you are doing well

--certainly has a different mode of action than Lyrica and Neurontin, much more in keeping with other drugs in the anti-epileptic class. For one thing, it is metabolized by the liver, like most drugs, not the kindneys, as are Lyrica and Neurontin--in fact, it was engineered from carbamazepine with some subtle chemical changes to make it easier to metabolize in the liver and keep the side effect profile down compared to carbamazepine, although the side effect profile is not unfamilar to those who use anti-seizure drugs (central nervous system downregulation leading to dizziness, drowsiness, etc.). Increased sun sensitivity has also been noted--again, not uncommon in that drug class.

Alan is a big guy, so the dose seems reasonable--all I can say is if he takes one, keep a close watch on him, and make him report what he's experiencing over the hours.

I got the impression that he was an average size guy, maybe in the 180 lb class, or less. Dunno why, but that was my impression.
Mel, what is Alan's size?

I have a question about Steven Johnson Syndrome. Way back (long time ago), Alan was hospitalized for 10 days, in isolation because he came down with a BODY-WIDE RASH, his face ballooned up, and I kept telling the people in the ER that he had just began Celebrex a few days before this happened. They would not listen, they called in specialists and were examining him and he was getting bigger, and the rash was spreading and I was going "For god's sake, give him a benadryl".

They were clucking and going "Maybe Rocky Mountain Spotted fever, maybe this, then people began showing up in Haz Mat suits" They put Alan in isolation for a week and no one entered that room without being covered from head to to. They began giving him benadyl and lo and behold HE GOT BETTER. I have photos of him from that time. He looked like a swollen lobster in his face and the rash on his body was HORRIBLE.

I remember looking up reactions to celebrex and cox 2 inhibitors and read about Steven Johnson Syndrome.

So I said to myself "oh, he has Steven Johnson Syndrome". The doctors just told us "never give him Celebrex again or any sulfates". So we never did.

I have been researching Elavil and it can cause Steven Johnson Syndrome. But...and here is my confusion... did Alan actually have this? or did he just have a severe allergic reaction to the Celebrex?

I ask this because when one reads about Steven Johnson Syndrome it says says "severe body wide rash, (what Alan had) but then it goes on to further state "peeling of the skin and it can be fatal". Alan's skin never peeled, it just was a bad rash from head to toe, his face was completely beet red, and ballooned. When given the benadryl over the course of 5 days, his whole body slowly returned to normal, they took him out of isolation and said it was an allergic reaction to the Celebrex.

So did Alan ever really have Steven Johnson Syndrome, or could it have been a very mild case of Steven Johnson syndrome, or just a severe allergic reaction to the Celebrex. Or are the two the same thing?

I just want some clarification if anyone knows the answer.

Thanks much

Melody

Hi Daniella:

I'm doing fine except for my arthritis and scoliosis which flares up when the weather goes nuts. Yesterday I did not know it was going to rain and the pain between my shoulder blades hit me like a ton of bricks. I just moved very carefully. I don't take anything not because I'm a martyr but because I never know when it's going to strike and it does pass. I do very well it hot hot hot weather. I could walk forever in hot hot hot weather. When it's 97 outside I'm a new person.

I don't like cold. I found out I had scoliosis years ago when I would get this pain between the shoulder blades and I went to my doctor and I said "why do I get this pain every once in a while". He sent me for an upper back x-ray and I saw the x-ray on the screen and the technician said to me "you do know you have scoliosis, right?"

I said "I have what??" Then I looked at my x-ray and saw the curve.

I said "oh that's scoliosis".

Nothing can be done at my age so I just take care of myself, walk as much as I can and I live with it.

Best I can do.

Can't wait for summer. I shine in the summer.

Melody

personally i wouldnt try the anti seizure drugs before first trying amitriptylene or wellbutrin, both of which helped with burning and throbbing pain for me. Anti seizure drugs have more serious side effects for me such as being totally out of it, forgetful, dizzy etc. to me, anti seizure drugs which can cause seizure themselves arent drugs to be taken litely, unless really necessary.