My 12 year old has BD as people on here know b... - Behçet's UK

Behçet's UK

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My 12 year old has BD as people on here know but now has OCD in her elbow joints.

Michja profile image
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Has anyone with children about 12 to 15 with BD also had Osteochrondritis Dissecans and Cartilage injuries?

I'm so confused, is this another branch to my daughters ever growing list of complaints due to BD, OR is this due to all her medication? When asked if she played sport we answered NO as its been impossible the last 4 years. Jaida is lucky to get a 1 km walk in. This specalist operates on all the famous sporting stars in Australia. Also works for the Australian institute of sport. He wants to operate in a months time and said the scope will help clean out her joint therefor allow the blood flow helping the bone become strong again. I'm ringing the RCH tomorrow as I just can not believe this is happening. I actually disappointed the RCH hadn't done X-rays to see why Jaida had popping & grinding joints. I know BD has inflammation but we all could see clearly on the X-ray Jaidas problem.

As of last week her rheumatologist has increased her Infliximab dosage amount and having it every 4 weeks. Finally Jaida is off steroids. Going ok just heaps of huge ulcers on her legs & more starting on her face.

Just wondering what ideas you all have on minimising the scaring duo to ulcers. At the moment we are putting pure Vit E oil out of the casuals straight onto the skin. Has helped a bit.

Sorry to go on I'm just a bit upset for Jaida. Hope you are all well.

Michelle

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Michja
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Michja profile image
Michja

Thanks for the chat I would love to catch up for a coffee. I'm in Balarat but in Melbourne every 4 weeks for Jaida Infliximab. If you are near RCH we chould catch up there.

Jaida's first medication was Colchicine, it helped with ulcers in mouth, down below & on skin. It only helped for 4 months then steroids for 8 months then due to the eye disease she started Infliximab. Also on Gabapentin, Celebrex, Azathioprine, Melatonin & Ef Exor. To be honest I just want to wean her of the lot & see how she goes. BUT I'm just too scared.

Good luck with Emily I hope you get answers soon. Xx

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Meep

I have also used colchicine topically on ulcers. I have crushed the tablets and mixed with cream or vit e, the applied directly to the ulcer. I take colchicine orally as well in a fairly high dose (two tablets twice daily) and I just can't increase the oral dose due to explosive gi effects. The topical colchicine does seem to help. I also use topical steroids, either cream or puffer which does seem to speed healing.

Just a note, but when I took celebrex I had an increase in skin and mucosal ulcers.

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