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Just developed signs of IGA vasculitis ( Henoch Schonlein purpura).
Another new AI problem has cropped up which will require more specialists and treatment decisions. I’m already on much of what’s needed, but so frustrated at the endless list of AI disorders I have (7 now) and this one is serious. Of course this started 2 days before Thanksgiving and I will need to see 4 different doctors most likely. Would like to hear from anyone else living with this. So far mainly skin and mild kidney involvement, no GI problems. Already on most of the treatment ( prednisone, IVIG, MTX, Rituxan, high BP meds) for RA, CIDP, SLE and others. Worried the vasculitis is affecting my brain. Cognition going downhill. I turn 75 this week, falling apart at the seams!
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@slkanowitz, I'm sorry to hear that another autoimmune condition has cropped up to add to your list. You may also be interested in this related discussion to connect with others:
- Henoch Schonlein Purpura IGA Vasculitis Adult - Others out there?: https://connect.mayoclinic.org/discussion/henoch-schonlein-purpura-iga-vasculitis-adult-others-out-there/
Which specialists will you be seeing next?
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2 ReactionsI feel for you. I have multiple autoimmune disorders too but I'm not diagnosed with as many as you. My rheumatologist just says I have "systemic inflammation" and a whole range of medical problems. I was on Prednisone for about 35 years. On and off high doses for Prednisone for the first 20 years and continuously on moderately high doses of Prednisone daily for another 12 years. All this time more medications that I can recall were tried to spare me the "steroid burden."
Finally a biologic was found that works for me. The biologic got me off Prednisone and almost everything else I was using to control pain and inflammation. My nightmare started before the age of 32 when they said I needed a knee replacement but that was trauma related. At 32, my first autoimmune disorder was officially diagnosed after an infection and a genetic predisposition was discovered.
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2 ReactionsHow long have you been on the IvIg? I have been on it for Sjogren's (SFN) for just over a year and just now feeling some relief. I think it does take a while. Also, vasculitis is one of the favorite things the Sjogren's like to do. No doubt I had it some time ago as my legs were ultrasounded and the Saffenous veins (sp?) were explicedly closed off. (A good while before IvIg) The vein docs couldn't figure it out. (BTW: I am 78)
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1 ReactionI have been on IVIG since 8/23 for CIDP, but it also is supposed to help my lupus and RA. It does help my CIDP, as I can tell when it is wearing off. I have been on infusions every 2 weeks but am going to weekly (half dose) now as the effect doesn’t last 2 weeks. Waiting for Truxima, a Rituxan bio similar, to start working. It’s been 3 months since initial infusions and I can’t see any difference. Getting concerned I may not respond to it, then what? Not sure what triggered the vasculitis, but seeing PCP today and will try to get appointment with rheumatologist asap. If kidney function worsening, will have to find a nephrologist next. Exhausting to deal with all this and still have a life outside of the illnesses, appointments, etc.
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1 ReactionI had this at age 29 as a reaction to a medication (sulfa). It's more typical in children, rarer for adults. It's usually a reaction to something (meds or an infection often the culprits) and not an ongoing chronic condition. Usually they'll monitor kidney function for 6-8 weeks. It's possible one of your meds is the cause....have them check all that. In July or aug 2021 there was an article in the Lancet (pedicle journal) about a few documented cases of a 60+ y.o person that got HSP following a new vaccination.
Good luck, but this should not be something ongoing or requiring 4 new specialists.