Polyarteritis anyone?

Bless you! I am so sorry. I know you are scared. It's always scary with a new diagnosis and a new doctor. Write down your questions before you go in that you want to ask so you want get off track with the doctor and your med list that you are concerned about interactions with. I am praying for you.

Sorry you’re feeling poorly @efg4me

If your symptoms are cutaneous and don’t involve major organs consider seeing a dermatologist. Choose one who has seen vasculitis patients: the more, the better!

I am going through a flair of my cutaneous polyarteritis nodosa. With skin-only symptoms, I didn’t make the cut for a clinic appointment with rheumatologists at the major academic medicine, vasculitis clinic in Chicago. Fortunately, the dermatologist who biopsied me referred me to a metro Chicago vasculitis dermatologist saving me from a trip to Penn’s cutaneous vasculitis clinic.

There’s a general introduction to cutaneous polyarteritis nodosa in the 2022 article. A number of vasculitis dermatologists are authors of the 2018 paper. Perhaps one is local to you.

2022 Treatment of cutaneous vasculitis
https://www.frontiersin.org/articles/10.3389/fmed.2022.1059612/full
2018 Nomenclature of Cutaneous Vasculitis
https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.40375

Thank you for all your info! A dermatologist is where I started. I’ve been having these lesions off and on for many years but only 2 or 3, they never hurt, they didn’t itch. So, when I got a few this last time they looked more severe than in the past. I saw derm and he told me they were something else and a week after I saw him the lesions multiplied like crazy, they aren’t healing, they’re bursting open so I went back and asked for a biopsy. I see a rheumatologist tomorrow and idk what to expect. I also don’t know if the biopsy tells them if it’s just cutaneous (my legs are in pain, my joints hurt, my muscles are “heavy” and fatigued; most of my lab work is fine so far so I just don’t know. Prayers would help!! Thank you for your time

I did have one more question. If you only have cutaneous, do they still treat you with meds during flairs?

Yes, for me!
I have been on low-dose methotrexate pretty much since 2007 diagnosis. It also helps with my psoriatic and osteo- arthritis symptoms.
For the Jan ’23 cPAN ulcer, I was on prednisone that tapered from 20 mg/day over 8 weeks and we upped the MTX dosage. No new skin eruptions with that drug assault.

If the biopsy came back “polyarteritis,” one of your docs (rheumy, PCP/internist, derm) should be confirming no major organ involvement (physical, blood work, maybe imaging.) My rheumy ruled out major organ involvement which led to the “cutaneous” prefix for polyarteritis nodosa.

FWIW Depending on how your rheumy feels about patients who come in with Dr Internet articles, you might share this open-source diagnosis algorithm for cutaneous vasculitis https://onlinelibrary.wiley.com/doi/epdf/10.1111/j.1346-8138.2009.00761.x
Also, there’s literature suggesting a IgM aPS/PT antibody correlates with cPAN activity. See refs in my thread https://connect.mayoclinic.org/discussion/antibody-testing-laboratory

Lastly, look up @SusanEllen66. She has shared her cPAN journey on Mayo Clinic Connect

@efg4me welcome to the “wonderful world” of Polyarteritis Nodosa! I was diagnosed in 2016 with Cutaneous PAN. We are rare indeed, and it’s so hard to find anyone, including doctors who have seen it.

I learned as much as I could about this disease and was able to teach my PCP and others about it.

Last year I had another biopsy and there was no evidence of CPAN. I guess I have recovered. I’m not sure…
Best wishes.

@efg4me make sure the Rhemy starts you off on a high dose of prednisone! If they don’t, run to another one…

Thank you for your reply! I had a gastric bypass some time ago and that complicates the whole thing. Very little steroids (met with terrible pain) and zero NSAIDS, allergic to sulfa (which rules out dapsone)
They’re gonna have fun with me… on my way to the appt now. Thank you for all your support! (It’s so cool!)

I’m nowhere near being an expert on the subject but maybe you’re in remission (that’s the goal, I think???)