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New here- Help with VASCULITIS

Hi. I am the mother of a 17 yr old (daughter) with Crohn's. She was diagnosed at 12 and after several years of misery, was in complete remission with humira and imuran for the last 2+ yrs.
I come here today with a new deveolpment and I hope some of you are familiar. She started with erythema nodosum in early Oct. We checked it out and treated with short steroid run. Soon after she started getting red spots and bumps on her feet. They got painful and finally her feet started swelling. Vasculitis. More steroids for that. Helped a little while. now off the steroids and the swelling is coming back. We saw a rheumy who is great, but he is unsure the cause.
Anyone deal with vasculitis/swelling of feet and ankles with humira?
Thanks

Hi Jane and welcome to the community. I'm so sorry to hear about your daughter, that must be very rough

First off, be sure to connect with the other parents in our "Parents of Kids with IBD" section. They're a wonderful group of people and VERY knowledgeable.

With that said, did/does your daughters feet look like this:

yes.

and thank you

Look at the nails on her hands and feet. Are there vertical lines under her nails?

not really, nothing obvious that I have seen

the swelling that comes and goes is worrisome. She says her knee hurts today, but it does not look swollen. She was just scoped last week with a clean report from GI...although rheumy says there could be activity not detected BUT she has no intestinal pain or issues at all right now. What is up with the feet??

Worrisome indeed. How about her gums? Do they bleed easily or look a little off?

Thanks for your help...but I am not sure. She is with friends right now. I can look later.
She has had sensitive gums for a while I know.

I have three theories that you may want to discuss with your rheumatologist.

1. I believe she may have something called petechiae. That image is a picture of petechiae. Vasculitis can cause petechiae but when it comes to someone with Crohn's disease, I always want to look at vitamin/mineral deficiencies and the medications as the cause of any weird symptoms like this.

There are various causes but what I'm thinking of is a diagnosis most doctors think of here in the USA because it is so rare except in people who experience malnutrition (which people with Crohn's disease often do).

It's rare because my theory is she has vitamin C deficiency. Another name for that is scurvy. It can manifest as shin nodules, those red bumps, and swelling of the feet. However, as this paper showcases (print and take this with you), it definitely occurs in people with Crohn's disease.

2. Vitamin K deficiency can also cause petechiae. It's even more common than vitamin C deficiency but not all the other symptoms would fit as well.

3. Drug induced lupus. This would be from the Humira. Here's a good place to start your reading on that.

I hope this helps in some way. Again, connect with the parents in our Parents of Kids with IBD section. I can't recommend that enough

All my best to you and your daughter.

David, THANK YOU. The image is exactly what the bumps look like, I need to read more on petechiae. She tested negative for lupus but we are now looking into possibly that the humira is the cause. The vitamin C I hadn't thought of and will look into it as well.
Appreciate your time...)

I updated with vitamin K info as well in case you didn't see my edit

Jane, did your daughter ever have any lung symptoms anywhere near the time the erythema nodosum started?

David, no lungs problems. She had a bunch of bloodwork done when the swelling started and only tested postive for vasculitis. Of course her SED rate was up too, but her scopes were clean.
Her feet are still swelling and we don't know why. The red bumps look better but not completely healed. She has a few new erythema nodusom bumps here and there too.

Hi and welcome.
I'm from the Parents Forum.
I don't know to much about this but my little penguin might be able to help.
Her dear son has dealt with all kinds of things.
Also DustyKat is always a wonderful help to us all.
I hope you stop by the parent's forum. Our dear children are all ages on this forum.
We're here if you need us!

My DS has vasculitis as part of his Ibd .
His last scope showed mild damage but he still had joint pain and recurring vasculitis each time we lowered his pred dose to try to wean while he was on Mtx.
Our Rheumo also felt it was unresolved inflammation.
We even increased the Mtx - it didn't matter
The Rheumo theory was there are a lot of places that the scope can't see and they didn't biopsy the entire colon
So after a month of this
Gi and Rheumo decided to switch to remicade
No more vasculitis except when his remicade started to wear off so they upped his dose .
DS vasculitis was also in the bottom of his feet.
Ask for an ultrasound if it ever goes above the knee
Hugs

Hi. Thanks. Did your son have any typical crohns symptoms at the same time as the vasculitis? I understand there may be activity somewhere in the gut where they can not see, but she has not had a digestive problem/symptom and her GI is now looking at almost perfect scopes and calling her crohns managed. The rheumo says maybe not controlled but is also thinking it may be caused by the humira.
ugh, if she swells above the knee I may freak.

My son does not have diarrhea very often. Most constipation which we were told by multiply Gi had nothing to do with his crohn's . We now know differently since his constipation ceased with remicade but that's another story.
This past summer most of his symptoms were EIM based sorta.
Gi had stated the rest of his stuff left was functional in nature.
He had stomach pains low level all day everyday , tenemsus , mouth ulcers, fatigue and joint pain.

DS had the spots when he was on pred but a lower dose but also had streaks that would start in the feet and go up the entire legs .
The streaks were when he was on next to no pred.

His crp . Esr , and mre were normal btw .

Thanks all. Turns out she has HSP (Henloch-Schonlein purpura). Been quite a ride with doctor after doctor and many tests, but a ped nephrologist is who really nailed it. So far so good with new med, Celcept(sp?). Has been off Humira for 3 months with no sign of intestinal flare or involvement right now. Lupus is mentioned a good bit but all her markers are negative. I feel we reached a pinnacle with this latest. Fingers crossed for success and easier road.

I ended up with HSP last year, and then was diagnosed with Crohn's this spring... It took 6 months to get down off the prednisone without spots reoccuring. Stay ontop of any spots, swelling and joint stiffness. I started having issues getting up from sitting and my family doctor didn't take it seriously and ended up almost unable to walk and 2 trips to emerg before getting referred to a rheumatologist who was able to diagnose it.