Hi everyone,
I am writing this while experiencing significant "vascular violence" in my body. I have been diagnosed with Antiphospholipid Syndrome (APS/APLA), and over the years, it has manifested as severe systemic neuropathy.
My symptoms often feel like a "clogged drainage system." I experience intense brain fog, systemic pain that even reaches my teeth, and a feeling of being "crushed" and swollen after eating or upon waking up. It feels as though my nerves are being suffocated by poor venous drainage (specifically the jugular veins) and micro-clotting.
My recent blood work shows very high Complement levels (C3 at 153 mg/dl, C4 at 38 mg/dl), suggesting a massive inflammatory response. My MRI indicates micro-clots, likely driven by NETosis (Neutrophil Extracellular Traps).
I am about to start a new treatment protocol including Rinvoq (Upadacitinib) 15mg, increasing my Aspirin to 100mg, and a stack of Alpha-Lipoic Acid, Vitamin D/K2, and Collagen.
I’m looking to hear from others who suffer from APLA-related neuropathy:
- What treatments or lifestyle changes helped you manage the nerve pain and the "crashing" fatigue?
- Have any of you found success with JAK inhibitors (like Rinvoq) or other biologics for APS symptoms?
- For those who achieved some level of recovery or "reconciliation" with their body – how long did it take for the nerves to start healing once the clotting/inflammation was under control?
I would appreciate any insights or shared experiences. This journey feels like a constant battle between the body’s memory of illness and the hope for structural repair.