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Damage to legs from Henoch-Schonlein purpura? Stumped the doctors

Autoimmune Diseases | Last Active: Feb 7 8:21pm | Replies (47)
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@jsimmons74

The prednisone helped until it was out of his system. I can’t get anyone to return our call because he hasn’t been seen yet. They will only see him sooner if it gets so bad he goes to the ER which right now we are definitely not doing bc of Covid19. I would love some ideas of things to read up on. I can’t find anything that fits his symptoms. Each dr says they are stumped and refer us on. I just want to make sure “waiting” isn’t casing more damage since it seems to be getting worse the last 2 months. The HSP was given in Chattanooga PC and the also by Vanderbilt Rheumatologist. That was 2018. Since then it has just been this strange pain and discoloration in his legs when he stands.

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Replies to "The prednisone helped until it was out of his system. I can’t get anyone to return..."
Colleen Young, Connect Director | @colleenyoung | Apr 19, 2020

@jsimmons74, I'd also like to add my welcome. COVID-19 is proving to be a big disruptor, especially for people dealing with managing chronic issues or not yet diagnosed issues. I'd like to tag other member who have experience with Henoch-Schönlein Purpura (HSP) also known as IgA vasculitis (IgAV) to help out as you wait for appointment. @astaingegerdm @ralph97 @anet may have some experience to share with you and your son.

JSimmons, I'm sure you know about the Vasculitis Foundation, but just in case you haven't this may prove to be useful information for you - IgA vasculitis https://www.vasculitisfoundation.org/education/forms/henoch-schonlein-purpura/

It is frustrating that you can't get an appointment at Lurie Children's because your son hasn't been seen there yet and COVID has reduced new patient appointments. Have you considered contacting Vanderbilt where he has seen a rheumatologist and asking if they offer video consults. I know Mayo Clinic is doing this for patients. It might be worth a try.

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