Enlarged Lymphnode And Rash Humira

[Chladnyam]

Hi! My daughter started Humira 2 months ago. It seems like since
then she has developed what looks like a heat rash on her
Trunk. It’s also itchy. She’s been tested for mono and strep, both negative. She also has a few enlarged lymph nodes just above her
Collarbone on her right side only. She’s had an ultrasound and they just show enlarged. Not suspicious or infected. Anyone have children on Humira or Remicade with lymphnode reactions or who developed a rash? She has appt with ID but she doesn’t have any other symptoms such as fever.

 

[Maya142]

Have you seen a dermatologist to figure out what the rash is? Sometimes a biopsy is necessary to figure out the rash.

I'm going to tag other parents since I don't have a lot of experience with rashes - my daughters have both been on Humira but didn't have side effects.

my little penguin
crohnsinct
pdx
Pilgrim

 

[my little penguin]

Heat rash
Please see a dermatologist familiar with biologics
Ds has this woth remicade
We were told it was drug eruption rash (basically from the remicade )
It came and went until Ds had an allergic reaction to remicade

Ds was in humira for close to 5 years when a large cervical lymph node (jaw line appeared )
No fevers
ID monitored it for a month
Tested for lots of things including cat scratch disease
Hmm wasn’t that
Sent us to ent since it continued to grow
Inpatient two days of iv abx (no sign of infection in any of the ultrasound s)
They decided to do a needle biopsy (this test is useless and didn’t answer anything )
Next day had a excisional biopsy (removed the entire lymph node
-it was 3.5 cm wide by that point )- left the smaller ones

Cultured it and let things grow for three months
Nada
Nothing infectious showed up
He did have multiple granulomas in it
Which we were told were due “autoimmune disease “ by some of his docs
Other doctors said the granulomas were from crohns

After all that they tried humira again
It failed to work and was switched to stelara

Hope it helps

 

[pdx]

My daughter has been on Remicade for 4 years, and while she hasn't had a rash like you describe, she's definitely had some derm issues. She had Remicade-induced psoriasis on her scalp for several months; once she restarted methotrexate, that went away completely. She also gets a pimply rash on her legs in the summer, usually when she starts shaving her legs again. Her doctors say it's folliculitis, and it responds pretty well to topical antibiotics. I know that you don't have to be on biologics to suffer from folliculitis, but I think she's extra prone to it because of her immune suppression.

Anyway, I think it's good that you have an appt with ID, and seeing a dermatologist would probably be good too. Good luck with figuring out what's going on, and I hope it turns out to be easily treatable.

 

[crohnsinct]

Adding to the choir on the derm suggestion. The anti tnf's cause lots of skin issues most of them benign.

Both of my daughters have Remicade induced psoriasis. In their scalps it is thick plaques but my one daughter has it on her stomach and it is a. red pimple like rash and itches. The derm can probably take one look at it and let you know what it is.

Both of my girls have also had swollen lymph nodes numerous times. It has always been nothing but good you had it checked out and are watching it.

 

[Chladnyam]

Thank you for all of the feedback! It always helps to hear from other parents. Seeing the GI today and ID next week. Thanks everyone!

 

[Chladnyam]

We have an answer. After a CT scan and many blood and urine tests, she was dx with histoplasmosis. Her CT scan showed enlarged nodes in her chest and abdomen. They started her on itraconazole and we are repeating labs to see how well it’s workikf. In the meantime they have also stopped her humira so she can fight the infection. Anyone else have experience with final infections while on Humira?

 

[Chladnyam]

Should have checked for typos! Fungal infection not final infections

 

[my little penguin]

Ds had mastoiditis while on humira
Had to stop humira and mtx while he got iv abx
And then while on oral abx for a while

He later restarted both

Same when is lymph node swelled
6 weeks off humira while they waited to rule out infection
But failed humira when he restarted and had to switch

 

[my little penguin]

How is she holding up without humira ??
Has the Gi given any plan B if she is flaring ??

 

[Chladnyam]

She is actually doing great without Humira. It’s been 8 weeks and she just had her colonoscopy last week. Visually it looked perfect. Waiting on her biopsy results. Her Histo levels are now negative. She is still on itraconazole and asacol. Met with ID yesterday and seems like she could have restarted her humira weeks ago. Now that she’s been off, they are testing her levels. Nervous about her restarting an anti TNF now. Fungal infection was a scary diagnosis.

 

[my little penguin]

What about Stelara?
IL-12/IL-23
Less infection risk per our iD
But not sure on fungal stuff

Glad things look ok on the scope
I thought humira stayed in the system for 12 weeks ???
After the last dose but obviously very low levels .

That would be tough
Good luck