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#1
04-28-2010, 09:22 AM
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Enough is Enough! I stopped dilantin over a week ago, and my owie lips and the burning itchy rash went away on its own like it did when I was on Lamictal. No antibitoics needed because I stopped the med right away so my lips wouldnt get bad and infected. but my mum asked me yesterday if Chad was hurting me in anyway. she was all concerned and I was super shocked. Of course he isnt, because I woudlnt stand for it. She pointed out that I have bruises all over my arms. but when I looked, they werent brusies. a few weeks ago I had tiny raised spots on my right arm. only 3. when it looked like a tiny uncoloured cluster of goosebumps. and thats it. I figured it was the rash starting again. so I stopped the meds right when my lips acted up. Now I have those all over my body and they are purple/red/blue and small. about the size of a finger tip. i t literally looks like chad could have grabbed my bicep and squeezed/dragged me somewhere. but there are too many of them (7) and they are on my back, thighs, ribs, one small one on my chest near the center of my breasts (where my bra sits) and a few on my neck, and on my butt. no where else. not on my hands, or face or below the knee or anything. Im going to take a pitcure of it and put it on here. just gotta figure out how with my cell phone. any idea what this could be and why its "getting worse" when I stopped the meds. can SJS still progress without treatment even though the meds has stopped? I havent gotten this one checked yet.
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB  THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.     |
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#2
04-28-2010, 09:42 AM
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| Rae -- 1. Go to the doctor. 2. I don't think it's SJS, but I do think it's caused by the Dilantin. Although you stopped a week ago, it can take up to two weeks for Dilantin to leave your system entirely. IF that's the case, in theory, it should go away over the next few weeks. However, since the bruise/rash may indicate a variety of causes, I highly recommend that you... 3. Go to the doctor! |
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#3
04-28-2010, 09:43 AM
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| hope you can see these. im at work, otherwise I would have taken a picture of my back. so I'll do that when I get home.
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP. |
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#4
04-28-2010, 09:49 AM
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| Rae, does your bruise/rash look anything like the pix in this site? http://www.patient.co.uk/doctor/Purpuric-Rashes.htm |
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#5
04-28-2010, 10:04 AM
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| Rae, I'm with Nakamova. Bruises and rashes are listed as severe reactions to Dilantin. Severe as in seek immediate attention. |
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#8
04-28-2010, 11:31 AM
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| I tried benadryl and nothing happened, so I took the allergy stuff the ER doc told me to take last time. didnt work either. and Nak, it doesnt look like those photos. looks like hickeys/brusies. not raised or itchy or burning. I wil have to wait for doctor until saturday. or i could wait until the 6th and see my neurologist.
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP. |
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#9
04-28-2010, 11:53 AM
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| Rae, GO TO THE DOCTOR. I'm not kidding about this. You need to make sure it isn't S-J, even in the early stages. S-J could literally kill you. Go to a dermatologist if you can. This is nothing to fool around with. I've been posting about the lamictal, and now the Trileptal, rash I've been struggling with this last month. The only reason I'm still on the meds is because a dermatologist looked at the rash and said it wasn't Steven's Johnson, and gave me meds to keep the rash in check. Please let us know how you are feeling every day? |
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#10
04-28-2010, 12:19 PM
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| I will go. I just need to wait until saturday when I can go to the walk in. Im tired of taking time off work. and I dont have anyoen to cover em at the moment because the controller is out on leave from surgery. so im a little stuck at the moment. but I have no other symptoms at all. I feel fantastic. just this unsightly rash.
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP. |
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#11
04-28-2010, 01:18 PM
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| Dilantin can mess with platelets, and have other vascular side effects as well. My guess is that's what's happened to cause the "bruising", especially since you're pretty sensitive to meds. I understand about not wanting to miss work, but please keep an eye on the rash/bruises and go to the doctor if there's any change for the worse. Fingers-crossed that it will go away as the Dilantin continues to exit your system. |
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#13
04-28-2010, 01:44 PM
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| Ill let you guys know what happens when I go to the doc. on saturday.
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP. |
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#14
05-03-2010, 02:15 PM
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| Alright, I totally forgot to go to the doctors this weekend, but the rash thing is going away slowly. still not itchy or burning. got my appointment with Dr. Fast on the 6th (my last one hopefully) and we will see what he says.
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP. |
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#16
05-03-2010, 03:12 PM
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| yeah pretty much. but gotta go in to see my family doc, so i can get him to set me up with chris's doctor. yay for a better neurologist. hopefully he wont get mad that I took myself off the dilantin.
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP. |
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#18
05-03-2010, 03:50 PM
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| Originally Posted by Nakamova  :
 He's there to have your best interest at heart & it was in your best interest to stop the dilantin (no question).
__________________ "It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason |
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#19
05-03-2010, 04:13 PM
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| I agree with with everyone here you know your body and its norms better than anyone! You did what needed to be done! Also Doctors may have degrees but they need to make their patients part of the treatment solution and not view them as problems or challenges to their authority. I hope you feel better soon. It has been twenty-seven years since I took phenobarbital or Dilantin but I still remember hating side there effects even as a child! John |
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#20
05-03-2010, 04:24 PM
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| thanks guys. i'll update on thursday
__________________ FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE. NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP. |
