Dermatology appointment

[polly13]

Hi everybody - Lucy is doing really well at the moment on humira and methotrexate - we had our GI visit last week and he felt her bum was healing but her fissures are still there and are deep. I was a little dissapointed because I thought she had improved more than she has, however having said that my little girl is feeling better than she ever has and that has had such an amazing effect on her so all in all things are good..........except for (there is always an except for with crohns) her skin.

Her head is covered with what looks like cradle cap but nothing will clear it, she has a horrible dry red rash around her mouth and has patchy excema on her torso - GI is convinced it is caused by the humira, I'm not so sure prior to her diagnosis the severity of her skin correlated with the severity of the GI symptoms. We are seeing a dermatologist on Monday - anybody been down this road, any advice on what to ask the derm?
Many thanks Polly x

 

[Farmwife]

Oh poor baby girl.
I'm going to tag in crohnsinct. I know her girl has skin issues brought on by another drug.
Grace has eczema on her belly, bottom and we still think her toes but learned the tops of her feet and legs are problem from JRA.
Her Derm gave creams that are medicated and a special soap. Also we do what's called wet wrapping. It works amazing. I'll post a link soon. Also I'll tag in MLP. One thing I learned was treat right when you see the very first signs of eczema. Don't wait because it might become a BIG issue. As far as the head.......I have that too and I use a medicated drops ever few weeks. However, hers sounds worse than mine.

HUGS

 

[DanceMom]

If you are able to see a pediatric dermatologist that's what I'd recommend. We saw a local dermatology nurse practitioner, and loved her, but she wasn't familiar with pediatric problems and medications.

 

[my little penguin]

DS ended up with serbasious and atopic dermatitis as a result of remicade.
Scalp would flake scab and bleed . A rash around his mouth and nose . His skin would peel on his hands . Sometimes blisters . This didn't happen all at once but slowly got worse.
We saw two pediatric dermo who where not familiar with crohn's meds and they dx roscea. This made us try an adult doc who had been a pediatric dermo for a while.
The doc had extensive experience with crohn's patients and what the drugs do to the skin.
This was perfect for us.
It was explained that biologics don't cause skin issues but if your child is prone to them they are more likely to appear. We now know for DS his body was fighting against the remicade since he later had to allergic reactions.
The adult/ped dermo had us use a lot of different steriod creams plus a cream used for radiation burns regularly. They made such a difference from the other stuff.

Things were able to be kept clear.
That said once we stopped remicade DS's skin cleared up.
He is having minor stuff on humira but time will tell on that one.

Good luck

 

[Johnnysmom]

Johnny was prone to eczema and scalp issues when he was younger. He was not on any crohn's meds at the time. Prescription hydrocortisone kept it from getting out of control. He eventually just outgrew it. Not a problem now.

You should get a lot more information from the derm. I would ask if they want regular skin checks for skin cancer. Because of the increased risk from crohn's meds they check Johnny once a year. It is a pain but worth the peace of mind. Good luck and let us know how things go.

 

[crohnsinct]

Yep! O has Remicade induced Psoriasis and the scalp sounds very typical of scalp Psoriasis. We spent a lot of time with regular derms who told us eczema and prescribed steroids and they work but it always came back and eventually spread to, neck, face, underarms, privates, back chest. I asked my GI if there was a doc at the children's hospital and sent pics and he suspected she fell into the small population that actually gets psoriasis from Remicade even though it is used o treat psoriasis.

Sure enough a biopsy proved psoriasis not eczema and the ped doc at the hospital was very familiar with TNF treatment induced skin issues.

It affects a small percentage of patients. They may or may not have had skin issues before but more prevalent in patients who have a history of skin issues or family that has. Also more prevalent in females. It runs independent of Crohns.

We treat our daughter with topical steroids. Two weeks on two weeks off. Never totally clears it. No treatment for privates.

Eventually her joints got affects and they figured psoriatic arthritis so we added Methotrexate and that made joint pain go away and lessened the psoriasis a little.

Our derm says coming off tnf treatment or switching tnf works in half the cases but GI is calling the shots and my daughter doesn't want to take the chance and come off Remi. So we stay and she itches, flakes and is swollen and red.

There are pics on my profile page.

Believe it or not the psoriasis drives me way more crazy than the CD.

 

[polly13]

Thanks guys - mlp Lucy sounds very similar to your ds. For the moment while the symptoms bug her they are nowhere near bad enough to consider a medication change . The derm is in the children's hospital and GI referres all skin issues to her so I presume it won't be the first time she's seen this. Crohnsinct Lucy's scalp and mouth definately look more like psoriasis than excema but torso definately excema. Glad to know she's not the only one. Thanks for your help as always.
Polly

 

[Sascot]

I'm no help with the skin issues, but hope the dermatologist manages to give her a cream that can help get it better.

 

[polly13]

Had a good appointment - psoriasis on her scalp, excema on her face and some unpronounceable rash on her chest - so I have come away with scripts for three different creams and a shampoo - I'm actually thinking the whole thing is a bit ott!!! So I have to put the cream on her scalp every night and wash out every morning so looks like it will be very early starts in our house going forward but if it works it's worth it. All in all I felt quite positive afterwards

 

[Farmwife]

Did he say what was causing it all?

 

[dodie74]

Kian also has a rash around his nose and mouth.... looks like little spots and is red and itchy. His doc gave him a mild steroid cream but its not doing much. His inflammation marker is quite high at the min so I think its all down to that. we off to hospital on Thurdays for mri and scopes so hopefully get a chat with his ibd nurse and ask about this rash as its a new thing for him. xx

 

[polly13]

Kian also has a rash around his nose and mouth.... looks like little spots and is red and itchy. His doc gave him a mild steroid cream but its not doing much. His inflammation marker is quite high at the min so I think its all down to that. we off to hospital on Thurdays for mri and scopes so hopefully get a chat with his ibd nurse and ask about this rash as its a new thing for him. xx

I would agree I find with Lucy the severity of the rash around her mouth generally tends to correlate with the severity of her GI symptoms. GI and now the derm don't necessarily agree but I am not convinced they are not linked. Farm wife derm reckons the psoriasis is a side effect if the humira and that the excema and the other rash are pre existing and made worse by the humira. I am still of the view that the rash around her mouth is directly related to the crohns and as it is quite mild at the min it is correlating as usual with how good or bad her crohns is