Compicated HSP in young adult

[motherofhsp]

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!

[Hidden]

Hi,

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.

[motherofhsp in reply to Hidden]

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.

[Broseb]

Hi, I see that your post is two years old but I just joined. My daughter who is 13 seems to suffer very similar side effects from hsp. She has chronic leg and stomach pain. We just traveled to Children’s Hospital of Los Angeles pain management trying to find an answer. I hope your daughter has found relief and she is doing well.

[motherofhsp in reply to Broseb]

I am very happy to tell you, she is! She struggled with chronic hsp for about 4 years (the last two on iv rituxan). As she started rituxan, symptoms / flares slowly began to decrease . She has been in remission for about a year. She does continue to have some symptoms we attribute to the disease- tires easily, some issues with respiratory tract, pain to joints at times. We continue to monitor her urine for blood and protein--but compared to where she came from- we are so thankful. Hoping the same for your daughter. It is an awful, unpredictable disease.

[Broseb in reply to motherofhsp]

I am so happy to hear she is doing well! Thank you so much for sharing. We have an appointment on Monday with her hematologist and I will share what has worked for your daughter. I will keep you posted.