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Henoch Schonlein Purpura IGA Vasculitis Adult - Others out there?
Autoimmune Diseases | Last Active: Aug 23, 2023 | Replies (23)Comment receiving replies
A family member (47 years old) was diagnosed with henoch-schonlein purpura.
Although lasts 6 weeks, he’s entering the 3rd month. Taking prednisone for 2 weeks now, eating healthy; But protein and salt values still high.
Has Zero energy (can’t work, little exercise), pain in lower back, shaky hands and voice, incredibly sensitive (sad and depressed and ultra negative)
Not sure if it is the right diagnosis.
Feeling confused. How can I help this member? Who should I search for help?
Replies to "A family member (47 years old) was diagnosed with henoch-schonlein purpura. Although lasts 6 weeks, he’s..."
@saraga, this must be so hard to watch your family member suffer. I moved your message to this existing discussion:
- Henoch Schonlein Purpura IGA Vasculitis Adult - Others out there?: https://connect.mayoclinic.org/discussion/henoch-schonlein-purpura-iga-vasculitis-adult-others-out-there/
I did this so you can connect with other members like @radicchi @gelysaleigh @junetooth who can share their experiences.
Was your family member diagnosed by a rheumatologist? Rheumatology typically diagnoses and treats Henoch-Schonlein purpura (also known as IgA vasculitis). Is his doctor thinking he may not have HSP?
Saraga, Henoch Schonlein Purpura IGA Vasculitis in Adults is quite rare.
Was your family member diagnosed by a skin biopsy of a lesion?
What were the symptoms that manifested first? Mine was skin lesions, then GI and now kidney. Lungs can also be impacted, mine to date, are holding fine.
I want to help you as those of us who have this are few. I have resources to share.
Namely: if presented as skin lesion you need to get a biopsy taken and prepared in manner Mayo in Rochester needs it so they can diagnose one. Second, prednisone is often used and is one of the few aids. But it is a vicious drug and will cause many side effects. Shaky hands, mental/mood malabity.
What you describe sounds like the HSP IGA Vasculitis has progressed to IGA Nethropothy (sp) that is the IGA attcking the kidney.
The back pain and protein are symptoms I share.
My team includes:
Rheunatologist (auto immune), nephrologist (kidney), dermatologist (kidney), gastroenterologist (gi. My weakest link so far, still building my team), primary care doctor.
I am on a drug trial with Mayo in Florida (third patient with this disorder) to be treated in this trial. Early on the trial but my painful skin lesions have been in remission since I have been on the trial.
If your family members diagnosis is indeed HSP IGA Vasculitis. We need to connect him to Dr. Megan Sullivan, Rheumatologist (one of several Mayo team members) working my case.
Also you can reach me junetoothaker@gmail.com
Let’s try to get him to help. Or at least less impact.
June
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@saraga welcome to Mayo Clinic Connect. Your family member must be very uncomfortable and concerned. Has he given any thought to getting a second opinion? You can look for a large medical center or a university teaching hospital.
If he is interested in going to the Mayo Clinic, here is a link
https://MayoClinicConnect.in/1mtmR63
The Mayo Clinic is not able to see all patients, but they do have a care network of hospitals:
https://mayoclinic.org/about-mayo-clinic/care-network/members
I hope this will help