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henoch-schonlein purpura nephritis
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susanne73 posted:
Hello, My son Tyler 13, was diagnosed with HSP back in late June. Usually a self healing disease that effects the blood vessels caused by insect bites, prior upper resp infection or allergy to certain things. His began with bug bites around his ankles, within 2 days his legs were rash and swollen. 2 week later he was officially diagnosed w this. The doctors kept saying it would be gone in 6-8 wks which did not happen. In a small % it will go into the kidneys, his did. He has had blood and protein in his urine for 4 months now. After a kidney biopsy in July, he was put on steroids, cytoxin oral chemo blood pressure meds and lasik. After 10 wks it was not working. He is now on Cellcept, steroids and lasik. Two wks ago he had Rituximab and IVIG infusions. An appt Friday revealed no changes. He is now in stage 3 chronic kidney disease. His GFR is 30-59) with creatinine of 1.1 (which has been as high as 1.6) Does anyone out there have any clue what else can be done? My nephrologist said we have used and are using every thing out there to be known for HSP, and we will keep trying the same meds. We live in Cincinnati and go to Childrens hospital, which I know is one of the best, we are just looking for anything we could be missing.

Susanne
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John-SKPT responded:
I haven't read up on Henoch-Schoenlein in several years, so there might be something new out there. But damping down the immune/inflammatory response is the overall goal.

Sounds like they are running through the possible drugs systematically and carefully.

Sorry I just don;t have anything much to add that is new info.
 
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mimsy12 responded:
My 8 yr. old granddaughter has the same horrible condition. She developed it 4 months ago and has spent 16 days in hospital because of the intestional issues. My daughter is still trying to grasp the situation and I am trying not to press for too many specifics. I do know that her urine shows a 3 to 4 in protein and the kidney biopsy show early crescents. She has elevated eye and blood pressure and is showing sugar and bood in urine with the steroids meds. I don't know what the GFR is. Do any of these numbers sound familar.
Hugs to you and your son..


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