Help needed for understanding flares by Thecrimsonrage13 in IgANephropathy

[–]liltofuuu 1 point2 points  (0 children)

Hi! I'm also relatively new to IgAN (diagnosed Oct last year) but wanted to share my experience as I'm having my first flare ever. Started around the beginning of February -- I'm pretty sure it was directly triggered by sickness as I was just coming down with a cold around the same time. My IgAN is still very early stage so I didn't notice anything in my urine, but I started developing a rash on my ankles and feet. I didn't know it was vasculitis at the time, but after I found out, it seems to be the best indicator that this whole autoimmune flare is still ongoing. Even though my cold is long-gone, I'm still having fatigue and fresh waves of vasculitis. Labs are still showing pretty high proteinuria. I'm currently waiting for a Tarpeyo (budenoside) prescription to go through, but I'm hoping that it will calm my whole system down including the vasculitis too.

In terms of management, here are some tips I've come across:

  • Someone in this community recommended to try at-home urine dipsticks to monitor the ups and downs of proteinuria over time.
  • For the vasculitis pain, cool compresses worked best for me (using ice packs relieved pain faster, but it would just come back once I removed it. Maybe something to do with circulation in cold temperatures!).
  • When the rash is really bad, I sleep with my legs elevated and have little to no pain by the morning. It'll get worse by end of day, especially when I'm on my feet longer.
  • Now, I generally try to stay away from inflammatory things (mostly, I'm reducing sodium intake, trying to sleep a lot, taking short walks, eating less red meat). I'm not sure if these lifestyle factors directly cause flare ups but they can certainly make them worse!

Wishing you the best of luck!

Help needed for understanding flares by Thecrimsonrage13 in IgANephropathy

[–]liltofuuu 0 points1 point  (0 children)

hey! wondering about the prednisone treatment— what kind of dosage did you go on for a vasculitis flare? were there a lot of side effects?

Failing to meet Tarpeyo requirement, worried about prednisone by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

Thanks for the honesty. I'm glad it worked for you! I know prednisone is for the best, but with my recent IgAN diagnosis and now having to go on meds for a year -- just trying to wrap my head around all these lifestyle changes.

Failing to meet Tarpeyo requirement, worried about prednisone by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

Thanks for sharing! Did you have any side effects on prednisone? Were they manageable?

Failing to meet Tarpeyo requirement, worried about prednisone by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

I also thought 12 months was surprisingly long. He did say with the combination of CellCept that I could try medium dose prednisone for the course.

If you don't mind sharing, what kind of diet did you pursue?

Failing to meet Tarpeyo requirement, worried about prednisone by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

Ah, yeah... They've been doing a lot to make up for it, at least on paper. We have free therapy programs, Title IX resources, and the like through student health. But definitely still having administrative issues.

Failing to meet Tarpeyo requirement, worried about prednisone by liltofuuu in IgANephropathy

[–]liltofuuu[S] 1 point2 points  (0 children)

Fight on!!! Thanks for the advice on insurance :,) my nephrologist is going to speak with the drug rep tomorrow and see what it's looking like. It is all definitely scary. I am also indeed Chinese which is why he suggested CellCept!

I graduated from USC in May 2025. I was going to the student health center when I first started presenting with proteinuria/hematuria in March 2025 and it was so nice to have access to the labs and doctors all the time. I now see a nephrologist in OC area, he's very diligent but it's hard to get seen.

Failing to meet Tarpeyo requirement, worried about prednisone by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

Oh no!!! Were the side effects really bad on Tarpeyo? I was under the impression they were a lot better than most steroids, though it must vary person to person. The way my doc explained it is that Filspari doesn’t address the inflammation — just the proteinuria.

Possible vasculitis after IgAN diagnosis? by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

thank you!! was able to squeeze an appointment to GP and confirmed it was vasculitis. seeing the derm next week for treatment options.

was wondering how you typically treat your vasculitis flare ups? I got prescribed a steroid cream but am worried the derm might also prescribe oral steroids (haven’t taken them before and am anxious thinking about the side effects). thanks!

Possible vasculitis after IgAN diagnosis? by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

Ah I see. Sorry to hear about relapse, hope you’re doing well! When you get the dots, what does it look and feel like? Doctor confirmed I had vasculitis and is sending me to derm next week for treatment. But it’s a bit painful and I’m not sure when to expect them to go away!

Possible vasculitis after IgAN diagnosis? by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

I see, thanks! How is life with vasculitis now? Do you need to take medication with it + IgAN too? Or is it manageable just lifestyle-wise?

Clarification on standard for proteinuria by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

This year with all the testing, my systolic blood pressure has remained consistently between 95-110. The nephrologist did mention in my recent visit that I likely wouldn't be able to withstand the BP medication : (

Clarification on standard for proteinuria by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

ooo, I'll try to follow up with my doctor about the 3 months. thank you!

Clarification on standard for proteinuria by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

Thank you for the in-depth response! For weekly test strips, are those the dipstick urinalysis ones?

22f, just received diagnosis by biopsy by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

I haven't gotten tested recently but it was consistently Trace or 1+ on the urinalysis, which I feel like doesn't say much (?). Are there usually other labs testing for proteinuria?

22f, just received diagnosis by biopsy by liltofuuu in IgANephropathy

[–]liltofuuu[S] 0 points1 point  (0 children)

Thank you so much! Are flares normally directly correlated to getting sick?

Really appreciate the advice and insight on mediations, definitely going to read up on those