Rash Help

[Mallory's Mum]

Hey,

I'm so bad at posting but great at stalking

Last time I posted, we were headed to the hospital for IV steriods in hopes of controling the flare to give 6MP more time to work. After 4 days high dose steriods, we went home on 40mg sometime the beginning of May. We are now down to 20mg and having so many weird things going on.

Three weeks ago, she started getting this hoarse, sore throat that only hurts when she talks or doesn't but never when she eats or swallows. I first thought it was allergies but it has not gotten any better and PCP didn't even see any throat redness to suggest drainage. IBD doc said to watch as her Crohn's is throat to upper colon.

Then last monday on her 1 week blood draw for 6MP raised levels, we noticed a few spots on her arms. At first we thought they were bug bites but they slowly over the last week spread. They would sort of flare up, get red, and spread. Then they die down. Very weird but it wasn't much of an issue as they were crazy itchy. Now that they are taking over her arm and spreading to legs and tops of ears, it's another story. The IBD doc thinks they are erythema multiforme possibly but wants to see her on Wednesday. I'm not sure if we are going to make it as they are really getting awful.

I'm attaching a picture to see what everyone's thoughts are. This photo is normal looking and not when it's flaring. I've been Googling (no no I know) and I saw that you can get a rash from toxic 6MP levels, just because you have Crohn's, etc.

Also, at the blood draw, her CRP has gone up from 1.8 to 4.8 (18-48 depending on how it's converted) so we are thinking 6MP sucks and prednisone is tapering therefore Crohn's is having at her. Thoughts?

My poor lady is down in the dumps because she wants to be normal and she is not liking the "ugly arms" as she calls them. So frustrating as a parent who just wants to enjoy happy kids. :ybatty:

 

[kimmidwife]

Mallory's Mum,
It almost looks like some type of allergic reaction. Maybe it is from the 6MP. How are her levels? Just out of curiosity have you tried giving her a benadryl and see if she gets any improvement? If nothing else Benadryl will help the itching. Call her doctor and see if it is ok to give her one.

 

[kimmidwife]

PS. I googled erythema multiforme and I did not realize it is another name for stevens johnson syndrome. Caitlyn had a stevens johnson reaction to Imuran. (Imuran and 6MP are related drugs) This can become very serious. If it worsens take her in right away to be seen don't wait!

 

[jmckinley]

I was going to say the same as Kim. Looks like an allergic reaction. One way to test that would be with claritin, allegra, benadryl. If it is a reaction, it should go down and stop itching but come back when the med wears off.

That being said, I would get that looked at before it gets any worse!

 

[DustyKat]

They look like hives to me, so yeah an allergic reaction.

Has she taken any antihistamines? If so did she respond?

Dusty. xxx

 

[Mallory's Mum]

We have been living on Benedryl since Thursday and it doesn't seem to do anything. She is currently taking 4-6 doses a day. I am attaching the picture I took on Thursday after it started getting more noticeable. The attached photo is taking during one of the flare times so typically it was lighter. Compared to our previous photo that was NOT taken in a flare and you can see it's much worse.

She has had hives before and that was my first guess after thinking bug bites. But when she had hives thanks to codeine...they were everywhere including the trunk, which is currently spared. Our IBD doc said he originally thought med reaction but he said her counts were good. Of course Monday's work did not include 6mp metabolites as that takes a week to get results.

Never fails that our PCP still can't get her in today and I'm annoyed since we have to manage this for 2 more days. I'm to the point that we might just walk in to the PCP and just ask for atarax or something for the itching since Benedryl is not cutting it.

In regards to Steven Johnson syndrome, I think that is erythema multiforme major which the skin almost is like in a burn state. I think that the minor form is from med reactions. I would really like a medical professional to look at it especially since it's spreading everywhere at this point but her trunk.

 

[Sascot]

Your poor girl!! There really is nothing worse than watching them suffer and it never ceases to amaze me the amount of time some docs seem to think it's ok to let them suffer! My mom had a look (used to be a GP) and said it looks like an allergic reaction. I know she has been on the 6mp for a little while, but sensitivity can build up over a period of time. If in doubt - just take her in. Hope it settles down!!

 

[kimmidwife]

Mallorysmum,
Both are from meds reactions. Stevens johnson can even occur from over the counter meds. The rashes can look different ways. With Caitlyn the first symptom was a crazy high fever every time she took the imuran. Then when she broke out in blisters I took her to the ER the inexperienced resident thought she had Herpes. I was the one who ended up figuring it out (and of course all the herpes cultures were negative!)