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03-22-2013, 04:59 PM   #61
my little penguin
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Stevens-Johnson syndrome is a rare and unpredictable reaction. No test is available to help predict who is at risk. Some factors, however, may increase your risk of developing Stevens-Johnson syndrome, including:

Existing medical conditions. Viral infections, diseases that decrease your immunity, human immunodeficiency virus (HIV) and systemic lupus erythematosus a chronic inflammatory disease increase your risk of developing Stevens-Johnson syndrome.
from:

http://www.mayoclinic.com/health/ste...risk%2Dfactors


Signs and symptoms of Stevens-Johnson syndrome include:

Facial swelling
Tongue swelling
Hives
Skin pain
A red or purple skin rash that spreads within hours to days
Blisters on your skin and mucous membranes, especially in your mouth, nose and eyes
Shedding (sloughing) of your skin
If you have Stevens-Johnson syndrome, several days before the rash develops you may experience:

Fever
Sore throat
Cough
Burning eyes
When to see a doctor
Stevens-Johnson syndrome requires immediate medical attention. Seek emergency medical care if you experience any of the following signs or symptoms:

Unexplained widespread skin pain
Facial swelling
Blisters on your skin and mucous membranes
Hives
Tongue swelling
A red or purple skin rash that spreads
Shedding of your skin
from link above
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03-22-2013, 05:06 PM   #62
Devynnsmom
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A friends son had SJS and almost died. They thought he had chicken pox and it went from a few spots to him being in intensive care within about 48 hours. He was in hosp for about 3 mos.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
03-22-2013, 05:11 PM   #63
upsetmom
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Thanks MLP this what i'm asking the DR about today. I spoke to the nurse and she doesn't believe its SJS she thinks its from the flu / virus she had the week before.
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



03-22-2013, 05:22 PM   #64
upsetmom
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I've been wondering if it is SJS wouldn't it have spread by now.
03-22-2013, 05:26 PM   #65
my little penguin
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Ds had rashes and skin peeling due to remicade per the dermatologist we saw on Wednesday.
Not sure about spreading etc...
hope the GP can help.
03-22-2013, 07:19 PM   #66
Catherine
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Maybe you can get the dr to order this blood test: thiopurine metabolite

It tests the aza levels in the blood it cost $140 at our lab. We didn't get the bill but the lab didn't record they sent the test either.

If you do manage to get it order make sure they look it up there book as it has to be sent away.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-22-2013, 08:09 PM   #67
upsetmom
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We saw the DR that specializes in skin disorders and have an answer...The DR says its Exfoliative Keratolysis. The cause is unknown. He said it usually happens once , lasts a few months and doesn't come back. He didn't believe it was SJS ,from the imuran or from the flu / virus. Treatment is steroid cream and lots of moisturizer . He knew more than the dermatologist we saw the other day.
03-22-2013, 08:17 PM   #68
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How soon will you see improvement?

Last edited by Catherine; 03-22-2013 at 08:37 PM.
03-22-2013, 08:31 PM   #69
Devynnsmom
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I'm going to write that in the book I keep for Devynn and ask our doctor about it. We have been to the family dr, ped, and derm and nobody has any ideas. I hope your daughter feels better soon.
03-22-2013, 09:41 PM   #70
upsetmom
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How soon will you see improvement?
He said it could take months..
03-23-2013, 02:24 AM   #71
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Everything crossed that it clears up really quickly xx

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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
03-23-2013, 05:55 AM   #72
DustyKat
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I hope the creams work for you girl Mum and the condition clears up sooner rather than later! Good luck!

Hoping the nausea settles too! Fingers, toes and everything else crossed!

Dusty. xxx
03-25-2013, 02:09 PM   #73
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Glad to hear you got an answer. Hopefully the treatment works and it never comes back!
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-28-2013, 08:44 PM   #74
DustyKat
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How are things going Mum? Are the creams working?

Dusty. xxx
03-28-2013, 10:20 PM   #75
upsetmom
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No there's no improvement. The peeling has spread on both her hands and feet.
For some reason i keep thinking this is from the imuran.

Good news is the nausea has gone.
03-28-2013, 10:25 PM   #76
DustyKat
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Was there any mention that things may worsen before they get better?

That is so good to hear about the nausea!

Dusty. xxx
03-28-2013, 10:33 PM   #77
upsetmom
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I don't think he mentioned anything. I'm taking her to see him again tomorrow if hes working.
03-28-2013, 10:38 PM   #78
DustyKat
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That sounds like a good idea hun. I hope you get solid answers...good luck!

Dusty. xxx
04-05-2013, 11:23 PM   #79
upsetmom
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My daughters hands are starting to improve....but her feet are quite bad.... All the skin is peeling off and they look red...hopefully they'll start improving soon as well.
04-06-2013, 02:10 AM   #80
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Glad the hands are healing. Did they start getting bad first?
04-06-2013, 04:48 AM   #81
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If the hands are improving, that'd make me feel better anyway. Surely the feet will soon follow!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
04-06-2013, 06:31 AM   #82
upsetmom
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Glad the hands are healing. Did they start getting bad first?
Yes her hands got very bad before they started improving so hopefully her feet will follow the same pattern.
04-06-2013, 08:36 AM   #83
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When my dad had the peeling due to his chemo meds he also had a loss of sensation in his feet and hands. Is she having any other issues besides the peeling?
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
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Prayer
04-06-2013, 01:00 PM   #84
Devynnsmom
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I'm glad her hands are getting better. Devynn's feet are peeling again
04-06-2013, 01:37 PM   #85
my little penguin
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Peeling hands here for DS still .
Steriod creme worked but once we stopped they started again
04-06-2013, 04:22 PM   #86
upsetmom
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No other issues apart from the peeling and a bit of bleeding.
But then come to think of it she keep complaining that her leg keeps jumping /twitching . I keep thinking its restless leg syndrome but she says she doesn't shake it...her brain tells it to shake....she due to have a blood test soon.
04-06-2013, 04:54 PM   #87
my little penguin
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Does she have a Neuro?
Twitchy / jerking can be a sign of seizures .
http://www.epilepsy.com/epilepsy/types_seizures
04-06-2013, 05:03 PM   #88
upsetmom
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Does she have a Neuro?
Twitchy / jerking can be a sign of seizures .
http://www.epilepsy.com/epilepsy/types_seizures
No MLP she doesn't. When this happens she says that the leg feels itchy and she needs to shake it but then her brain tells it to shake...I've sat around with her for hours but i've never seen it happen.
04-06-2013, 08:34 PM   #89
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Just checking in. I am glad the peeling is improving. Could the leg thing be a side effect of imuran? I did a search and found several forums where patients on imuran said they experienced muscle twitching. It is not listed as a side effect that I could find.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
04-07-2013, 12:14 AM   #90
DustyKat
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I hope the feet soon catch up with the hands Mum, bless her.

What blood tests is she having?

Dusty. xxx
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