Dan was 15 years old in the winter of last year when he showed me that he had some large sores in his mouth. After several trips to the dentist and a referral to an oral surgeon for a biopsy, the biopsy came back as inflammatory cells and had us now head to both rheumatology and gastroenterology to investigate a cause. After loads of bloodwork and examinations and scopes, it was found that he also had some inflammation and ulcerations near his ileocecal valve area, so Crohn's was confirmed. We elected to start him on Humira in June of last year. After a few months, there was marked improvement in the sores in his mouth. He never really had any intestinal symptoms, so Dr just checked on the inflammation in intestines via calprotectin tests. THings were rather uneventful and bloodwork showed reduction in inflammation and tolerance of the medicine. Then in the very beginning of May of this year, he started with what we though were clusters of pimples in odd places--his wrist, knees, thigh, etc. They would break and form a flaky crusty irritated lesion in its place. More and more broke out until he had it all over his legs, back, arms, hands, scalp. They would itch sometimes, but not all the time. In the shower, he said they would burn. At about the same time, he also started complainin of his back hurting and hip/groin hurting. Then his chest would hurt. Peiatrician ordered xray of chest--normal and prescribed clindamycin for the rash thinking bacterial. Gastro dr suggested we visit Dermatology and go back to rheumatology for another consult. Derm said rash looks psoriatic, but cant be sure--justcontinue the clindamycin and treat it with bleach baths and triamcinolone ointment 2x day. While the rash has noticeably calmed down in some areas, it is being more stubborn in other areas. We have used the ointment for about 10 days. The groin pain has increased, back pain subsided somewhat, chest pain continues. Pediatrician has now ordered xray and mri of hip/groin and rheumatological type of bloodwork that came back normal except for CRP that was elevated--could be from rash. Gastro believes that Crohn's is under good control because latest calprotectin was 87--normal. Initially it was over 200 when he was diagnosed. Can't explain why he has lost weight from December to May and then another pound a week in the last couple weeks. So we still have our Rheum visit coming up...but now to pile on more...he has started feeling queasy over last few days and has had lots of gas and loose bowel movements two times today. I am so off kilter with all these symptoms...I don't know if they are related in some way and there is some underlying process taking place--or if they are just unrelated coincidences that are occurring at the same time. Could the rash and aches be related to Humira after using it for about a year? WHat about hte weight loss, and now queasiness, reluctance to eat, and todays gas/bowel movements? Maybe a stomach bug working its way through??? Or another condition we should consider? If it is potentially another rheumatological issue, then wouldn't the ana and sed rate and other bloodwork have come back not normal? And isn't humira used to treat some rheumatological processes?? I just want my Dan to feel normal again. Any advice from your personal experience would be greatly appreciated.
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New to this forum--Here's my son's story....
- Thread starter dansmom8
- Start date
Hi welcome to the forum though I'm so sorry you find yourself here.
We have a great group of parents in the Prents forum so I hope you browse through that subforum.
My son was diagnosed with CD at 15. He will be 21 this fall. He was also diagnosed with juvenile spondyloarthropathy, which is a joint condition that sometimes is found with CD.
There are a number of skin, joint and eye (as well as others) issues that can occur along with CD. These issues are referred to a extra intestinal manifestations or EIMs. If your child is having joint, skin or eye issues it good to find a specialist in each area that has dealt with EIMs related to CD.
My son hasn't had skin issues but he does have the joint issues as well as an eye issue that is an EIM of CD.
To answer your question there are joint conditions that use the same meds as CD bit even though a med may work for both conditions doesn't mean it will. My son was on remove first it really helped his joint disease bit not the CD. Humira was next and it didn't do much for either. We're on stelara now and things are great in the CD or the joint department.
My Little Penguin, another parent here has dealt with skin issues as an EIM of CD. Another parent Crohnsinct has a caught with CD and psoriasis but the psoriasis is exacerbated by the remicade which is also prescribed to treat psoriasis. It can be a little tricky at times for sure.
I hope you find some answers soon and your son finds remission and relief on all fronts quickly!
We have a great group of parents in the Prents forum so I hope you browse through that subforum.
My son was diagnosed with CD at 15. He will be 21 this fall. He was also diagnosed with juvenile spondyloarthropathy, which is a joint condition that sometimes is found with CD.
There are a number of skin, joint and eye (as well as others) issues that can occur along with CD. These issues are referred to a extra intestinal manifestations or EIMs. If your child is having joint, skin or eye issues it good to find a specialist in each area that has dealt with EIMs related to CD.
My son hasn't had skin issues but he does have the joint issues as well as an eye issue that is an EIM of CD.
To answer your question there are joint conditions that use the same meds as CD bit even though a med may work for both conditions doesn't mean it will. My son was on remove first it really helped his joint disease bit not the CD. Humira was next and it didn't do much for either. We're on stelara now and things are great in the CD or the joint department.
My Little Penguin, another parent here has dealt with skin issues as an EIM of CD. Another parent Crohnsinct has a caught with CD and psoriasis but the psoriasis is exacerbated by the remicade which is also prescribed to treat psoriasis. It can be a little tricky at times for sure.
I hope you find some answers soon and your son finds remission and relief on all fronts quickly!
Hi and welcome.
Glad you are seeing the rheumatologist soon. It is possible he has psoriasis and possibly arthritis (perhaps juvenile spondyloarthritis or psoriatic arthritis). My kiddo also has juvenile spondyloarthritis (JSpA) as well as Crohn's. It is associated with Crohn's. The back pain is very common in JSpA. Morning stiffness and pain that gets worse with rest and better with movement are also signs of inflammatory arthritis. Any joint can be involved, but often the lower back (SI joints), knees, hips and heels are involved.
It is diagnosed by clinical examination, blood work (inflammatory markers ESR and CRP - though in some cases they are not high, and a genetic test for a gene HLA B27 which is common with JSpA) and often MRIs. X-rays are typically negative because they do not show inflammation, just damage, and that takes years to develop (and you want to avoid it).
You really need a derm that is familiar with IBD and psoriasis to treat the rash. It may be that it is caused by Humira or Humira is not enough to control it. There are topical ointments that can be used for the psoriasis or systemic medications like Methotrexate.
Or if it is caused by Humira, switching anti-TNFs could be an option, if it is REALLY bothering him. Obviously, if it is working for his IBD, then you want to consider the risks and benefits before doing that.
I will tag crohnsinct since her daughter also has anti-TNF induced psoriasis.
I would talk the GI about his new gut symptoms, including the weight loss and see what he says. It's possible it's a bug, but I'd run it by his GI. Does he drink formula to keep his weight up (Boost, Ensure, Pediasure)?
And definitely wait and see the rheumatologist to see if he has some type of arthritis. If he does, you could add something like Methotrexate (which would help with both arthritis and psoriasis) or potentially switch biologics (probably to Remicade or Stelara). Increasing the dose of Humira also is an option. Is he getting it every two weeks? It can be given weekly and some doctors will even give it every 5-6 days.
Good luck!! Hope you get some answers soon.
Glad you are seeing the rheumatologist soon. It is possible he has psoriasis and possibly arthritis (perhaps juvenile spondyloarthritis or psoriatic arthritis). My kiddo also has juvenile spondyloarthritis (JSpA) as well as Crohn's. It is associated with Crohn's. The back pain is very common in JSpA. Morning stiffness and pain that gets worse with rest and better with movement are also signs of inflammatory arthritis. Any joint can be involved, but often the lower back (SI joints), knees, hips and heels are involved.
It is diagnosed by clinical examination, blood work (inflammatory markers ESR and CRP - though in some cases they are not high, and a genetic test for a gene HLA B27 which is common with JSpA) and often MRIs. X-rays are typically negative because they do not show inflammation, just damage, and that takes years to develop (and you want to avoid it).
You really need a derm that is familiar with IBD and psoriasis to treat the rash. It may be that it is caused by Humira or Humira is not enough to control it. There are topical ointments that can be used for the psoriasis or systemic medications like Methotrexate.
Or if it is caused by Humira, switching anti-TNFs could be an option, if it is REALLY bothering him. Obviously, if it is working for his IBD, then you want to consider the risks and benefits before doing that.
I will tag crohnsinct since her daughter also has anti-TNF induced psoriasis.
I would talk the GI about his new gut symptoms, including the weight loss and see what he says. It's possible it's a bug, but I'd run it by his GI. Does he drink formula to keep his weight up (Boost, Ensure, Pediasure)?
And definitely wait and see the rheumatologist to see if he has some type of arthritis. If he does, you could add something like Methotrexate (which would help with both arthritis and psoriasis) or potentially switch biologics (probably to Remicade or Stelara). Increasing the dose of Humira also is an option. Is he getting it every two weeks? It can be given weekly and some doctors will even give it every 5-6 days.
Good luck!! Hope you get some answers soon.
:welcome:
My kiddo has Crohns , juvenile spondyloarthritis (JSpA)
And Sweets Syndrome (auto inflammatory conditions associated with JSpA and Crohns ).
Second a dermo who knows Crohns and arthritis
We went to three before finding one who knew how to spell remicade
I would assume they would biopsy the rash to determine if it's part of Crohns /arthritis or something else
Ds bloodwork is always normal
His arthritis is currently flaring badly -multiple joints confirmed as swollen inflamed
Sed rate was normal
Crp normal
So in his case bloodwork tells us every little
The doc actually has to examine him
Ds developed JSpA while on humira
We needed to increase the dose and add mtx
This helped a lot
As far as Sweets Syndrome
Ds looked like clusters of hives-red pink
Flat purple rashes
Pimple like pustules in clusters
Some filled with pus and some had a dark red center
He gets them on his torso scalp etc...
The dermo knew by looking and did a biopsy to confirm
He takes a different med to help control the sweets but
It is much calmer when his Crohns and arthritis are calm
Second using formula to boost his weight
Ds drinks some formula with food to keep his weight and growth normal
Good luck
My kiddo has Crohns , juvenile spondyloarthritis (JSpA)
And Sweets Syndrome (auto inflammatory conditions associated with JSpA and Crohns ).
Second a dermo who knows Crohns and arthritis
We went to three before finding one who knew how to spell remicade
I would assume they would biopsy the rash to determine if it's part of Crohns /arthritis or something else
Ds bloodwork is always normal
His arthritis is currently flaring badly -multiple joints confirmed as swollen inflamed
Sed rate was normal
Crp normal
So in his case bloodwork tells us every little
The doc actually has to examine him
Ds developed JSpA while on humira
We needed to increase the dose and add mtx
This helped a lot
As far as Sweets Syndrome
Ds looked like clusters of hives-red pink
Flat purple rashes
Pimple like pustules in clusters
Some filled with pus and some had a dark red center
He gets them on his torso scalp etc...
The dermo knew by looking and did a biopsy to confirm
He takes a different med to help control the sweets but
It is much calmer when his Crohns and arthritis are calm
Second using formula to boost his weight
Ds drinks some formula with food to keep his weight and growth normal
Good luck