Vasculitis - have you been re-biopsied?

Hi Amy, @2catmom, welcome. I'm tagging fellow members @paulettab1 @kaystrand @SusanEllen66 @zenk @junetooth who have experience with vasculitis, erythema nodosum (EN), and/or polyarteritis nodosa (PAN) and who may have some thoughts to share with you.

I'm glad that you are responding well to treatment.

@2catmom nice to meet another CPAN person! We are few and far between…I was diagnosed in 2015, treated with prednisone for almost 8 months and that was it. Unfortunately, it left me with peripheral neuropathy, and Raynaud’s syndrome.
Right now I don’t exhibit any signs of cutaneous Polyarteritis Nodosa.

Last year I had a biopsy done on a bump on my arm. My dermatologist took a deep sample and concluded that the bump was a lipoma, and he didn’t see any sign of Vasculitis. So, perhaps this thing can go away after awhile. I don’t know.

Hi @SusanEllen66
Thanks for sharing your experience!
It got me searching the web...and in 2008 dermatologists report 4 overlapping stages of cPAN biopsy tissues as the disease progresses. In the final, quiescent stage (authors employ the euphemism 'healed') vascular inflammation is absent histologically but the vessels still appear partially occluded.
For more detail, entering the journal article title "A Morphological Study of Evolution of Cutaneous Polyarteritis Nodosa" in your preferred search engine should get you there. (As a new member, I'm blocked from posting urls.)

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- A Morphological Study of Evolution of Cutaneous Polyarteritis Nodosa https://journals.lww.com/amjdermatopathology/Abstract/2008/08000/A_Morphological_Study_of_Evolution_of_Cutaneous.1.aspx

@SusanEllen66, you mentioned other 'gifts' of cPAN including peripheral neuropathy and Raynaud’s.

I’m with you: last year brought my peripheral neuropathy diagnosis. Along with the EN, I believe I’m on the cusp of some kind of peripheral vascular condition and looking for a nonsurgical vascular physician consult.
I have cold feet and get occasional blue toe* and Ace bandage triggered PAD ‘night pain.’ (The Ace bandage was helping my biopsy incision heal.)
Though my cold feet haven’t progressed into Raynaud’s, my selfie infrared images with a FLIR ONE Pro mimick the sharp temperature demarcations like the white → blue transitions in photos of folks experiencing a Raynaud’s episode.

*there are two case reports, both open access, for ‘blue toe’ in cPAN patients:
2014 Cutaneous polyarteritis nodosa presenting as a solitary blue toe
2018 Blue toe syndrome in cutaneous polyarteritis nodosa

@2catmom
Thanks for the information! This disease is so very rare and it morphs from minute to minute and from person to person.
My “patriotic” feet started almost immediately after diagnosis. The red, white, and blue toes can be a source of entertainment for family members, lol. I did take a picture of one foot a few years ago. If I can find it maybe I’ll post it here just for giggles 🤭
I try to keep my feet warm, but even with socks and shoes they are still cold.

Hi Catmom,
I’m currently suffering with Leukocytoclastic Vasculitis, which is also a very rare autoimmune disease. I’ve heard of only 1 person who shares my disease, Ashton Kutcher. With his outcome, I pray I’ll feel as good as he does.
Have you seen anyone at the Mayo Clinic?

@loribe7 Welcome to Mayo Clinic Connect! I sure hope that you’ll get all your questions answered here! The autoimmune group has great members, so I’m sure you’ll hear by tomorrow.
How long have you had LV (the words are too long) and what treatment are you on?

Hi Catmom,
I’m from the Chicago area also. I was diagnosed with IGA Vasculitis (small cell) in May 2023. Began with very odd cold like symptoms for three weeks then a rash ( broken capillaries ) which appeared on my legs & moved up entire torso & arms. Luckily I have a daughter that is a PA. She did a biopsy for me & told me to make a appt with a Rheumatologist. So from onset of symptoms to diagnoses was about 4 weeks. Was put on prednisone then Aziathioprine. I have started seeing an internist/functional medicine doctor. She found through a stool test I had a parasite, which she’s treated. Low in Zinc, vitamin D resistant, on progesterone for night sweats & other supplements. I have been gluten free for 6 years, have recently given up dairy and stopped drinking alcohol when I was diagnosed. I’m now being weaned onto Low Dose Naltrexone for my vasculitis. It has fewer side effects than Aziathioprine, which I’ll be weaned off of soon. I had no energy, was napping and fell asleep at 8pm. I did research and found a Dr.Brooke Goldner online that had green smoothie recipes & protocols. I feel like a new person! I actually have energy, no symptoms and feel ‘normal’. Took me nine mths to a year but feeling great! Don’t read the bad things online. I get it, it’s a scary diagnosis but if you take care of yourself, you’ll be ok. If you have unexplained symptoms call your doctor. Be your own advocate!