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Vasculitis UK
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Compicated HSP in young adult

I am new here. My 22 yr old daughter was diagnosed with complicated hsp vasculitis 3 years ago, at the end f her freshman year of college. The first and foremost symptoms were the pupuric rash and severe abdominal pain, she also has arthritic type joint pain in legs, found a hole in her nasal septum, and has trace to moderate blood and small amts protein in her urine that we monitor regularly. She struggled with almost continuous symptoms for about a year while she was treated with high dose steroids, dapsone, cellcept- all without much affect on disease but many side affects. Eventually, she was started on iv rituxan- it has put her in a somewhat controlled remission. After 2 years of rituxan treatment and a visit to the Mayo clinic in Rochester, MN, we are taking a rituxan break to see if she will remain in remission without it. She has been purpura free for about 6 months, still struggles with some lethargy, arthritic symptoms and still has some traces of protein and blood in her urine. We are cautiously optimistic. Looking for any similar experiences and outcomes. i am a registered nurse and constantly trying to educate myself about this disease and its processes. Thanks for any input!

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I hope someone will be along to share their personal experience but we only know of a few people in the UK who have had Rituximab to treat adult HSP. Part of the problem is a lack of evidence base to treat it as there haven't been any RCT's.

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Becoming more common here now, though we did have to seek pre-authorization. Rituxan has made a dramatic difference, though she still has occasional flares, esp during winter or high stress. We had really depleted all other options as steroids and cellcept didn't do much to diminish disease but side effects were awful. Hopefully, time will prove its benefit and it will become more available. Thank you for your response.


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