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03-19-2013, 09:42 AM   #31
Jmrogers4
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Glad they are seeing her tomorrow, hope it all gets taken care of quickly
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-20-2013, 12:14 AM   #32
CarolinAlaska
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I'm sorry yet another symptom that she has to deal with. This one sounds serious. I'm glad they are going to see her tomorrow.
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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.
03-20-2013, 12:40 AM   #33
Kimberly27
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I hope she feels better soon.

Could it be the antibiotic? Did they have you start both at the same time? That would make it confusing to sort out.

Good luck!

Kimberly
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Mom of 17 year old son with Crohn's
2000 mg Pentasa
125 mg. Azathiorpine
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Past Meds:
Metronidazole (Flagyl), Ciprofloxacin, Levofloxacin, Xifaxin, Zosyn, Augmentin-ES, VSL#3
03-20-2013, 03:57 AM   #34
upsetmom
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They have no clue what this is. The GI said the skin peeling and rash are not from the imuran. He stopped the flagyl because he thinks that might be causing the nausea.

The dermatologist had a look as well and said it's probably from the flu she had 2 weeks ago. She said all her skin on her hands and feet will peel off.

They did a blood test for streptococcus and we will find out the results on Friday. So we are no closer to an answer.
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03-20-2013, 08:16 PM   #35
Devynnsmom
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upsetmom, I hope she feels better soon. They have never figured out what caused Devynn's skin to peel off either. Is your daughter in pain? Devynn's feet get so sore when they peel.
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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
03-20-2013, 08:38 PM   #36
Farmwife
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upsetmom, I hope she feels better soon. They have never figured out what caused Devynn's skin to peel off either. Is your daughter in pain? Devynn's feet get so sore when they peel.
Devynnsmom
Didn't your girl have the flu before the peeling?
Sorry I forget!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
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03-20-2013, 09:17 PM   #37
Devynnsmom
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No, she's had the peeling of her feet three times now. No flu, no fevers.
03-20-2013, 09:32 PM   #38
Kimberly27
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Does it hurt her?

Kimberly
03-20-2013, 09:52 PM   #39
kimmidwife
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Hi upset,
I hope she is feeling better sending hugs. I also sent you a PM.
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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.
03-20-2013, 11:07 PM   #40
upsetmom
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Her fingers are quite sore ...the rash on her thighs is a lot better after putting on steroid cream. Shes been trying to avoid having showers because her skin peels even more.
She still woke up with a lot of nausea even though we stopped the antibiotics. I'll be talking to the nurse tomorrow.
03-20-2013, 11:14 PM   #41
Mehita
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Skin peels with the flu? Really? The dermatologist had no other thoughts?

I hope she feels better soon. Poor thing...
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
03-20-2013, 11:18 PM   #42
Kimberly27
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How many days has she been off the antibiotic? One? It can stay in your system for a couple/few days. My son reacted badly to flagyl. I hated that medication.

No shower. Would a bath with mineral oil help? Can the skin get rehydrated, or is it like a chemical burn?

I hope the nurse has a good suggestion. Good luck.

Kimberly
03-20-2013, 11:19 PM   #43
upsetmom
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She kept telling me that when the hands swell and they go back to normal the skin peels...BUT there was no swelling to begin with.

Last edited by upsetmom; 03-20-2013 at 11:35 PM.
03-20-2013, 11:26 PM   #44
upsetmom
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How many days has she been off the antibiotic? One? It can stay in your system for a couple/few days. My son reacted badly to flagyl. I hated that medication.

No shower. Would a bath with mineral oil help? Can the skin get rehydrated, or is it like a chemical burn?

I hope the nurse has a good suggestion. Good luck.

Kimberly
Shes only stopped the antibiotics last night..but shes been on these before without this problem.

The skin stays very dry.

We just put gloves on and plastic bags on top so she can have a shower.
03-20-2013, 11:33 PM   #45
Kimberly27
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What about those special gloves that some women wear at night to hydrate their hands? I might be afraid of infection, but if you lather her in antibiotic gel, coconut oil, or the steroid cream, and then put the gloves on, maybe that would provide some relief? The gloves sell in our local store near the wrinkle creams. I don't know what make the gloves "special". Maybe it's just a gimmick?

Good luck! Here's to a speedy recovery!

Kimberly
03-20-2013, 11:37 PM   #46
upsetmom
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Thanks Kimberly i never thought of that i'll try that tonight.
03-21-2013, 03:24 AM   #47
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Hope her hands and the nausea settle down!
03-21-2013, 05:46 AM   #48
upsetmom
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I put on vitamin E oil and then gloves...I hope it helps.
Her thumb has peeled that many times that it was bleeding tonight..
03-21-2013, 01:04 PM   #49
Johnnysmom
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An increase from 50mg to 125mg seems pretty big. No wonder she is feeling a bit nauseated. My son was started on 50mg and then put on 75mg which made him nauseated, then his white blood cell count dropped and they realized it was way too high a dose for him. There is a period of adjustment with the nausea that will go away but our GI said if you are feeling the side effects, the dose is probably too high for you.
My son now takes 50 mg per day and is 5'9" and 128lbs. It's a pretty low dose but it is right for him, maybe your daughter will just need a lower dose??

Also, our new GI said it was okay to eat before the 6mp (our old GI said no) but it is not suppose to be taken with milk products as it can inhibit the absorption. My son takes it at night right before bed to sleep through any mild nausea.

It took us a while to find the right dose, so hang in there. Once we got it right, 6mp has been a wonderful drug for us.
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Dx Oct 11 2011 Crohns disease
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03-21-2013, 01:13 PM   #50
upsetmom
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My GP recommended that her dose gets lowered but the GI said there's no way they're lowering the dose....they said they need to give the right amount for it to work. If the nausea persists for a a few weeks they are going to try 6mp.
03-21-2013, 01:49 PM   #51
positivemum
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When my son went on azathioprine it was 75mg and he took it with his evening meal to reduce nausea. He now takes it just before bed. He was also on Omeprazole when he first started it and this helped. he is now off that and on 100mg of aza and fine. not all drugs suit all people. Go back to the docs if not happy
03-21-2013, 03:22 PM   #52
Catherine
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There is a blood test to check the levels of aza in the blood. Sarah had this blood test and her levels were really low, and why she moved up to 125mg.
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Catherine
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)
03-21-2013, 11:46 PM   #53
upsetmom
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This morning when my daughter woke up her hands were a lot better ...till she washed them then the peeling was back...I'm taking her to see a DR tomorrow who specializes in skin . He's not a dermatologist just a GP.

Blood test for strep was good...so the nurse still thinks this is all caused from some virus she had. I'm still not convinced this is all from a virus. I hope this DR has an answer for us tomorrow.

Also her ESR had gone from 24 to 48 in a week.
03-22-2013, 12:10 AM   #54
Kimberly27
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Trust your instincts.

Kimberly
03-22-2013, 06:11 AM   #55
Johnnysmom
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My dad had peeling skin on his hands and feet from his chemotherapy. The Dr. didn't seem at all surprised by this side effect. I know that 6mp is considered a chemotherapy drug, do they feel that might be the cause?
03-22-2013, 06:15 AM   #56
upsetmom
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I know that 6mp is considered a chemotherapy drug, do they feel that might be the cause?
My GP seems to think it is BUT the GI said its not.
I'm taking her to see another DR tomorrow.
Her thumb is starting to look bad.
03-22-2013, 07:03 AM   #57
Catherine
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What weight is your daughter, Sarah's GI didn't what her on 125mg of aza as she considered the dose too high for her body weight.
03-22-2013, 07:19 AM   #58
Catherine
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[url]www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/.../ascimura.pdf[/ur

I tried to link the information leaflet. I have copy the following from side effects on the leaflet:

Tell your doctor immediately, or go to Accident and Emergency at your nearest hospital if you notice any of the following symptoms:

allergic type reactions e.g. skin rash, itching and difficulty breathing, wheezing or coughing
muscle pain or stiffness
severe joint pain
kidney problems
feeling faint especially when standing up
severe abdominal pain
diarrhoea
jaundice, a yellow discoloration of the skin / eyes
serious skin reactions such as blistering or peeling.
03-22-2013, 03:18 PM   #59
upsetmom
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What weight is your daughter, Sarah's GI didn't what her on 125mg of aza as she considered the dose too high for her body weight.
Shes 53kg
03-22-2013, 04:55 PM   #60
my little penguin
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skin peeling can be SJS

http://www.mayoclinic.com/health/ste...ndrome/DS00940

DS's skin peels but also stops within a day.
the derm gave us some cream used for people on radiation therapy.

FWIW Ds was on 50mg of 6-mp at 22 kg.
good luck at the doc.
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