Seeking Support: APS Suspicions, Lymphocytic Vasculitis, and Persistent Skin Lesions (No Ulcerations)

[Alex_ro]

Hello, everyone!

I’m Alex, 41 years old, from Romania, and I’m looking for support and insights from others who may have faced similar challenges. Here’s a summary of my journey so far:

In 2022, I developed severe preeclampsia during pregnancy, which didn’t respond to treatment and led to a preterm birth at 32.5 weeks.

Over the past year, I’ve been dealing with progressive skin lesions, diagnosed as lymphocytic vasculitis (macular arteritis) based on a biopsy. Another biopsy described findings consistent with thrombotic vasculopathy (blood vessel changes with clots and inflammation). The lesions have not progressed to ulcerations but remain as persistent stains that worsen with cold exposure, prolonged sitting, or standing, and improve with leg elevation.

I also experience numbness in my legs and arms, fatigue, and sensitivity to cold.

I have a history of slightly positive lupus anticoagulant tests, raising suspicion of antiphospholipid syndrome (APS), but I haven’t received a confirmed diagnosis.

Current treatments (aspirin, pentoxifylline, and doxycycline) haven’t stopped the progression of symptoms.

I’m reaching out to connect with anyone who has dealt with conditions like livedo racemosa, lymphocytic vasculitis, APS, or similar vascular or autoimmune issues. I’d love to hear about your experiences, effective treatments, or suggestions for tests to pursue.

Thank you so much for reading—I’m grateful to have found this community!

[Lure2]

II suggest you do a blood test for a firm diagnose of APS first of all. Then try to find a Specialist of our illness. They are difficult to find as this is a rare illness that very few Doctors know about. Try to learn as much as possible about it and the most typical symptoms if you are positive.

Best luck from Kerstin in Stockholm

[Alex_ro in reply to Lure2]

Thank you so much for your suggestion and support!

I truly appreciate the advice on getting a firm diagnosis of APS and finding a specialist who understands this rare condition.

Regarding my current status: I’ve already undergone several rounds of testing for APS, including lupus anticoagulant, anticardiolipin antibodies, and beta-2 glycoprotein antibodies. The results have been borderline in the past but recently came back negative for lupus anticoagulant.

I’m under the care of a rheumatologist and dermatologist, and we’re continuing investigations to clarify my diagnosis and address my symptoms, including progressive skin lesions and other systemic signs like numbness and fatigue.

I’m also trying to learn as much as I can about APS and related vascular conditions to better understand the next steps in managing my health.

If you have any recommendations for specialists or additional resources that have helped you, I would be incredibly grateful. Thank you again for taking the time to share your experience—it means a lot!