A Crohn's related skin question

[Pilgrim]

Hello friends! H is dealing with a weird skin issue. We took her to a GP who diagnosed it as a fungal infection and we are treating it as such but it does not itch. After a few weeks if she fails treatment we will go back for second look.
Meanwhile, my mommy brain is really worried it may be Humira induced psoriasis or just....psoriasis.
She has it in patches on different parts of both legs....just small dry patches that are developing into larger redder areas.
She has high trough levels of Humira, and this past year has dealt with a few unusual secondary type infections.
If anyone has experience with psoriasis and how it starts...I could be way off here. But I know there are kids who have both diagnoses and more.

 

[Jo-mom]

Hi Pilgrim - our mommy brains always seemto be working! I believe that itchiness always is a part of psoriasis. There is obviously a skin thing going on but it could be something else (not psoriasis). My niece has psoriasis and and itchiness always is part of the package. @crohnsinct and @Maya142 will probably be able to help you as I think their daughters had/have psoriasis from taking biologics.

Big hug.

 

[Maya142]

I don't think itchiness is always part of psoriasis - my husband was just diagnosed with psoriasis and he never complained of itching. His is scalp psoriasis but he also has nail psoriasis, which was misdiagnosed as a fungal infection for years. My younger daughter also has nail psoriasis but nowhere else on her body. Nail psoriasis is definitely not itchy!

Here are some pics of the different types of psoriasis: https://www.aad.org/public/diseases/psoriasis/what/symptoms

I do think you need to see a dermatologist to see the rash. A GP may not be able to distinguish between eczema, psoriasis and a fungal infection. I know several kiddos who have arthritis, whose psoriasis was misdiagnosed as eczema. Nail psoriasis is also something to watch for because it is strongly associated with psoriatic arthritis. These are some pictures of nail psoriasis: https://www.aad.org/public/diseases/psoriasis/treatment/genitals/nails

You do have to zoom in to see nail changes properly on that page. That site also has a comparison between psoriasis and eczema, under the "What is psoriasis" tab.

Definitely take pictures!! Rashes tend to magically disappear the day of your appt. !!

 

[Pilgrim]

Lol! That seems to be true for many ailments (disappearing day of appointment).

Good advice. I will check the link. Thank you so much.

 

[Jo-mom]

Good information! Thanks Maya.

 

[crohnsinct]

Hmmm. Both my girls have psoriasis but that dry and scaly on the legs it would usually itch for my two but true O has had it on occasion on her arms and it didn't itch BUT it also wasn't scaly or dry.

HOWEVER, both girls have also had numerous fungal breakouts on their skin that looked exactly like psoriasis that we treated with cortisone creams and they didn't go away so off to derm we went only to find out it was never psoriasis at all and fungal. The anti tifs leave people susceptible to fungal infections and the skin is not exempt from that.

I second Maya's suggestion of a dermatologist visit and even then dermatologists can even misdiagnose things. O's psoriasis was misdiagnosed for a long time as eczema by a dermatologist!

 

[Tesscorm]

S was once diagnosed with 'probable' molluscum contagiosum. It's been a few years now so I don't remember much about his symptoms except that it started with little pimple-like bumps...

Molluscum contagiosum - Symptoms and causes

www.mayoclinic.org

 

[crohns digest]

Hello friends! H is dealing with a weird skin issue. We took her to a GP who diagnosed it as a fungal infection and we are treating it as such but it does not itch. After a few weeks if she fails treatment we will go back for second look.
Meanwhile, my mommy brain is really worried it may be Humira induced psoriasis or just....psoriasis.
She has it in patches on different parts of both legs....just small dry patches that are developing into larger redder areas.
She has high trough levels of Humira, and this past year has dealt with a few unusual secondary type infections.
If anyone has experience with psoriasis and how it starts...I could be way off here. But I know there are kids who have both diagnoses and more.

hi friend ,i was on humira for sometime and i alway got alot of chest infection and rash on my neck ,i posted some information on humira on my page called crohnsdigest http://crohnsdigest.net/ hopefully this might help
regards pj

 

[InstantCoffee]

Can I ask what you're treating it with?

I have chronic scalp, neck and shoulder fungal acne outbreaks (most likely a malasezia) and I believe chron's makes us more susceptible.

I have to be careful in any kind of shampoo, conditioner, hair styling cream, lotion, etc. I use in order to not get break-outs. It took me a long time to find the cause and it wasn't until I went on a strict avoidance of fungus-promoting products.

This had me eliminate all oil-containing products except mineral oil.

My top treatments have been nizorale shampoo and de la cruz sulfur ointment (stinky, drying, but potent).

You could likely use pure mineral oil to keep it from drying too much, or, and this may sound weird, I've been able to use Mizon snail repair gel (made from snail secretions) without getting a reaction.

Some types of fungus can be very stubborn and even trace amounts of a food product can allow them to flourish, such as an oil low on the ingredient list.

I found that many OTC anti-fungal products did not work for me, such as lotramin, and other dermatitis or topical antimicrobial treatments made it worse, such as things with tea tree, zinc oxide creams, salicylic acid, benzyl peroxide, etc.

The Fungal Acne Treatment Bible (2020): Cure Malassezia With Science!

EVERYTHING you need to know about treating pityrosporum / malassezia folliculitis (fungal acne) & related conditions. This is a free 50+ page guide! Enjoy.

simpleskincarescience.com

So it may NOT be fungal and that's why it's not responding, or it may be EXTREMELY stubborn fungus that requires very strict product use.

 

[Pilgrim]

S was once diagnosed with 'probable' molluscum contagiosum. It's been a few years now so I don't remember much about his symptoms except that it started with little pimple-like bumps...

Molluscum contagiosum - Symptoms and causes

www.mayoclinic.org

It doesn't look like molluscum.....

 

[Pilgrim]

hi friend ,i was on humira for sometime and i alway got alot of chest infection and rash on my neck ,i posted some information on humira on my page called crohnsdigest http://crohnsdigest.net/ hopefully this might help
regards pj

Thank you! I will look at your site.

 

[Pilgrim]

Can I ask what you're treating it with?

I have chronic scalp, neck and shoulder fungal acne outbreaks (most likely a malasezia) and I believe chron's makes us more susceptible.

I have to be careful in any kind of shampoo, conditioner, hair styling cream, lotion, etc. I use in order to not get break-outs. It took me a long time to find the cause and it wasn't until I went on a strict avoidance of fungus-promoting products.

This had me eliminate all oil-containing products except mineral oil.

My top treatments have been nizorale shampoo and de la cruz sulfur ointment (stinky, drying, but potent).

You could likely use pure mineral oil to keep it from drying too much, or, and this may sound weird, I've been able to use Mizon snail repair gel (made from snail secretions) without getting a reaction.

Some types of fungus can be very stubborn and even trace amounts of a food product can allow them to flourish, such as an oil low on the ingredient list.

I found that many OTC anti-fungal products did not work for me, such as lotramin, and other dermatitis or topical antimicrobial treatments made it worse, such as things with tea tree, zinc oxide creams, salicylic acid, benzyl peroxide, etc.

The Fungal Acne Treatment Bible (2020): Cure Malassezia With Science!

EVERYTHING you need to know about treating pityrosporum / malassezia folliculitis (fungal acne) & related conditions. This is a free 50+ page guide! Enjoy.

simpleskincarescience.com

So it may NOT be fungal and that's why it's not responding, or it may be EXTREMELY stubborn fungus that requires very strict product use.

We are treating it with Terbafine Hydrochloride (Lamasil). The doctor said that we need to treat it for at least two weeks before thinking it isn't working. I tried an OTC medication first but only for 5 days and it appeared to get worse. We'll see if this one works. I will give it more time.

 

[Pilgrim]

I talked to the Humira people who advised holding off on injections until the infection clears. Last month she had a weird bacterial infection which also needed us to hold Humira for a few weeks.

Once we resumed Humira, she developed the fungal infection within 2 weeks.

Her trough levels are very high. This pattern gives me pause to think we need to talk to GI about decreased dosing. But no, she is not in remission. Not doing badly but not in remission.

 

[my little penguin]

I know your system is different
Can she see a derm who has experience with people on biologics
We have found that makes a big difference for skin issues .
Ds had foliculitus , molluscum and plantar warts while on humira
A lot less skin issues on Stelara
But having a good derm is also key to getting things taken care of quickly

 

[Pilgrim]

It's possible she could see a derm. It would take many months.
Last month they thought she had Impetigo. She also had plantar warts for so long....they disappeared when she had to take antivirals for shingles a year ago.
How long has he been on Stelara? Is it still building or at therapeutic levels?
Our GI has mentioned Stelara.

 

[my little penguin]

He started Stelara in August 2017 so 2.5 years
After 8 months there was minor inflammation on the scopes but his joints were still bad so they increased to 90 mg every 4 weeks in March 2018 and has stayed there since with fecal cal below 15( not detectable) blood work completely normal range
He is on a second biologic (another condition) plus mtx for arthritis.
Only issue is plantar warts every once in a while

How old is she now ?
Under 12 is harder to get it approved and prescribed .

We were told crohns of the small intestine does “ok” with Stelara but the colon doesn’t fair as well on it
That said arthritis typically does not do well in studies on Stelara (dosing is much lower abd farther out ) but his Rheumo states that the combo of higher plus mtx has really helped put his joints with no active disease .

Newer IL-23 only drugs are supposed to be better but they are still phase II or III for adults with crohns so it will be a while ...

 

[crohns digest]

Can I ask what you're treating it with?

I have chronic scalp, neck and shoulder fungal acne outbreaks (most likely a malasezia) and I believe chron's makes us more susceptible.

I have to be careful in any kind of shampoo, conditioner, hair styling cream, lotion, etc. I use in order to not get break-outs. It took me a long time to find the cause and it wasn't until I went on a strict avoidance of fungus-promoting products.

This had me eliminate all oil-containing products except mineral oil.

My top treatments have been nizorale shampoo and de la cruz sulfur ointment (stinky, drying, but potent).

You could likely use pure mineral oil to keep it from drying too much, or, and this may sound weird, I've been able to use Mizon snail repair gel (made from snail secretions) without getting a reaction.

Some types of fungus can be very stubborn and even trace amounts of a food product can allow them to flourish, such as an oil low on the ingredient list.

I found that many OTC anti-fungal products did not work for me, such as lotramin, and other dermatitis or topical antimicrobial treatments made it worse, such as things with tea tree, zinc oxide creams, salicylic acid, benzyl peroxide, etc.

The Fungal Acne Treatment Bible (2020): Cure Malassezia With Science!

EVERYTHING you need to know about treating pityrosporum / malassezia folliculitis (fungal acne) & related conditions. This is a free 50+ page guide! Enjoy.

simpleskincarescience.com

So it may NOT be fungal and that's why it's not responding, or it may be EXTREMELY stubborn fungus that requires very strict product use.

hi i thave alot of scail and hair danfruf that when bad fall on to the skin and get very sore i do not use any shampo with alchol in it and it hepls

 

[Pilgrim]

He started Stelara in August 2017 so 2.5 years
After 8 months there was minor inflammation on the scopes but his joints were still bad so they increased to 90 mg every 4 weeks in March 2018 and has stayed there since with fecal cal below 15( not detectable) blood work completely normal range
He is on a second biologic (another condition) plus mtx for arthritis.
Only issue is plantar warts every once in a while

How old is she now ?
Under 12 is harder to get it approved and prescribed .

We were told crohns of the small intestine does “ok” with Stelara but the colon doesn’t fair as well on it
That said arthritis typically does not do well in studies on Stelara (dosing is much lower abd farther out ) but his Rheumo states that the combo of higher plus mtx has really helped put his joints with no active disease .

Newer IL-23 only drugs are supposed to be better but they are still phase II or III for adults with crohns so it will be a while ...

She is only 9 years old yet....last scopes showed active duodenal disease. She had fcal in the 400s last check but asymptomatic. She may not be the right candidate for Stelara.

Also hoping to avoid returning to Mtx due to severe headaches on that med.

 

[InstantCoffee]

hi i thave alot of scail and hair danfruf that when bad fall on to the skin and get very sore i do not use any shampo with alchol in it and it hepls

I suggest getting Nizorale shampoo, massage onto the scalp with no water and let sit 20 minutes. Do this daily for 1 week.

Then 3 times a week for the remainder of the month.

See if it clears.

Avoid conditioners and shampoos with oils and esthers. Very hard to do, but possible.

 

[JackG]

I had some skin problems before when I was on Pentasa, but they were relatively minor. Once on Humira, however they increased a lot.

This makes sense, I suppose, since they say biologics compromise your immune system. The skin is the body's biggest organ, and evidently first to start to crumble with these drugs. I would not only get itchy, scaly spots, but I got hard spots below and they eventually erupted into pimple like things that burst, accompanied by lots of pain. I eventually learned to handle them with Hibiclens or something like it daily, covered by a bandaid with antibiotic cream. Sometimes bigger bandaids. Under the arms and groin were the hardest to deal with, but these eruptions happened all over.

Moving to Entyvio, with less systemic impact, was expected to help and it has. But the problem IS NOT GONE, just less frequent. I can't stress enough how important Hibiclens is in preventing and catching them early. There's also a product called Aloe Vestra that's used without water, and I like that a lot too.

 

[my little penguin]

@JackG
Did you ever have them biopsied ? See a Derm
Humira and other biologics can “unmask “ secondary skin conditions
A good derm will know what is related to the biologic and what is related to crohns
Sweets syndrome and PG are both associated with crohns and can cause lesions

Crohn skin disease | DermNet NZ

Crohn skin disease, Crohn disease of skin, Cutaneous Crohn disease. Authoritative facts from DermNet New Zealand.

dermnetnz.org

 

[JackG]

Yes, I have had them biopsied, and was told they are psoriasis. Frankly, though they gave me a med that helps (see pic), I'm not sure how much to believe since their first recommendation was HUMIRA. Isn't it funny how it can help in one person and aggravate another? In my case there's no question Humira helped my Crohns but accelerated my psoriasis. I saw the increase and I saw the decrease when I went off of it.

 

[crohnsinct]

@JackG if Hibiclens works they could be folliculitis. At least that is what they sound like. Especially in the areas you are getting them. I get them and I don't have IBD nor am I on any meds.

 

[crohnsinct]

Oh o.k. just saw our post. My girls both have Triamcinolone. It sorta helps them. The scalp is hard to treat. They both use Fluocinolone oil (derma Smooth). It helps some.

 

[crohnsinct]

Hibiclens exacerbates my girls' psoriasis because it is very drying to the skin. It does help if their patches are infected though.

 

[lysagrey]

I had a weird reaction to steroids so maybe that is that