Interested in connecting with adults with this diagnosis. Specifically, those with kidney involvement, skin lesions and/or gi folding interseption (sp). Thank you.
Interested in more discussions like this? Go to the Autoimmune Diseases group.
Welcome, @junetooth. I'm tagging fellow members like @radicchi and @gelysaleigh to join this discussion about adult IgA vasculitis.
June, you may also have some knowledge to add to this related discussion:
– Damage to legs from Henoch-Schonlein purpura? Stumped the doctors: https://connect.mayoclinic.org/discussion/teenager-damage-to-legs-from-hsp-stumped-the-doctors/
How long have you been living with this condition? How is it affecting your kidneys and GI tract?
Henoch Schonlein Purpura Purpura IGA Vasculitus Adult
Diagnosed Sept. 2021 via skin lesion biopsy sent to Mayo from hospital admission at Maine Medical Center.
Presented first as skin lesions Purpura, red dots, legs, across belly, tops of feet (extremely painful), inside of arms.
First ER hospitalization included extreme malaise, unresponsiveness/passing out during blood draw. Sick. Unwell.
Treated with iv prednisone. Discharged home.
Skin flares occur about every 21 days. I feel sick and then they start to dissipate. Purpura, bright red in the beginning. Like a child put dots on my body with a sharpie. Over progression dots have progressed in size from dots to eraser sized, to raised lesions, to purple lesions, and now full on open sores during this active flare on buttocks and thighs. ER started on 50 mg. PCP increased to 60 MG prednisone for 10 days. Currently on 40 mg. With new regimen of 21 day taper from here.
Current lesions have subsided I believe in response to prednisone.
2 weeks after my diagnosis, my 25 year old son was diagnosed with metastatic testicular cancer.
I departed ME and flew to meet him in CO for urological surgery then on to TX to MD Anderson Cancer Center.
While in Houston had 2 more hospitalizations.
Severe pain with a flare in November, 21. Then in January 21 hospitalized with GI involvement. Pain scale did not describe. Worse than childbirth. IV morphine did not lessen the pain.
ER staff treated for idiopathic GI blockage. Oral GI drink and then literally watched and felt my GI system flip and move from right side to left. I suspect GI interseption (sp). Pain dissipated after “GI” large intestine, upper abdomen, “moved” internally. Was not a stool issue, little was discharged. GI seemed crimped.
4th ER hospitalization on Aug. 25, 2022 severe aggressive skin lesions on buttocks and thighs, open wounds ranging in size from quarters to lemons. Also maroon purple sized open wounds on legs. Red dot Purpura, typical presentation, on belly and underside of arms.
Most serious new complication is kidney involvement. Blood and protein in urine. Severe back pain mostly left side. Tylenol 500-1000 mg. Mostly bed ridden since 25 Aug.
Son was declared in remission on 5 Aug 2022. Praise God after
Testicular cancer, metastatic to abdomen, spleen, back and bi lateral lungs; pulmonary embolism; pneumonia and blood clot to jugular vein – he is alive. He rang bell and they believe he is in remission.
My body is telling me I must now attend to my own health.
Am building care team in Maine. Met with nephrologist 9/7/22. He has diagnosed progression to IGA nethropathy. Nephrologist is taking over prednisone dosing. Starting me on glucometer to watch sugar levels. Advised short term diabetes likely with high dose prednisone. Prescribing antibiotic to counteract prednisone induce pneumonia. Is triaging with dermatologist who wanted to add dapsone. The two are contraindicated.
Nephrologist will triage with dermatologist today to assess which drug to start with first. Nephrologist believes advancement to chronic kidney disease is the greatest concern.
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IGA Vasculitis (diagnosed Sept. 2021) has advanced to diagnosis of IGA Nethropothy as of 9/6/22.
Need quick education on IGA Nethropothy. Treatment options, what to watch for, who to add to care team.
Nephrologist is monitoring proteinuria, microscopic blood in urine, high leukocytes, high immature platelets being released into blood. Creatinine is okay but shows kidneys are not working as they should.
Building care team: Have Nephrologist (kidney monitoring, prednisone dosing, antibiotic to prevent prednisone pneumonia); dermatologist (lesions, dapson); PCP (omaprazal, high dose calcium, B3).
Adding Rheunatologist to care team on Friday.
Sick and bed bound. Have struggled with extreme malaise, feel unwell, loss of appetite, lower back pain. Please share tips, suggestions, resources on IGA Nethropothy.
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