What Dysautonomia Patients Should Know About Antiphospholipid Syndrome

ChookityPop

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What Dysautonomia Patients Should Know About Antiphospholipid Syndrome .

These criteria were designed for rigorous clinical research studies, not for diagnosis. Unfortunately, most practicing physicians believe they were designed for diagnosis and this has resulted in patients with low titer antibodies and/or non-clotting manifestations not being diagnosed with APS, when they do have the syndrome. My hope is that we can change this perception, because I believe that with earlier diagnosis, we can prevent the thrombotic events! "Some of these manifestations include migraine (which may be severe and refractory to usual treatments), memory loss, seizures and stress fractures. We have now demonstrated that POTS, NCS and OH may also occur as non-clotting manifestations of APS." Dr. Schofield said.
Importantly, Professor Hughes has found over the years that many of the non-clotting manifestations of APS often improve significantly or may even be completely aborted with anti-platelet agents such as aspirin or clopidogrel, and/or warfarin or heparin. He has also found this to be true for autonomic symptoms in some APS patients. Two patients in our study with POTS that did not improve with standard APS treatments (despite improvement of other APS manifestations) improved significantly with regular intravenous immunoglobulin (IVIG) therapy.https://dysautonomiainternational.o...-should-know-about-antiphospholipid-syndrome/

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Anticoagulation has also been reported to reverse non-criteria neurologic manifestations that are not primarily thrombotic in their origin, further supporting the role of thrombosis in the pathogenesis of APS. On the other hand targeting the immune response through steroids, rituximab, IVIG or PE, can improve many non-criteria symptoms. A great number of other treatments are under investigation. DOACs represent an appealing alternative to warfarin, especially considering the young age of APS patients and the necessity of INR monitoring. Nevertheless, available evidence does not support their use. Other interesting options include antioxidant agents, monoclonal antibodies, and several agents targeting specific cells or molecules in the complex pathogenetic pathway of APS.https://www.frontiersin.org/articles/10.3389/fneur.2018.01001/full
Autotimmune dysautonomia: A 100-person 2015 study found APS antibodies in 7% of POTS patients while Schofield’s 38-person 2018 study found that 76% of participants in a retrospective IVIG trial in autoimmune dysautonomia (many of whom had POTS) had APS antibodies.

Examination of anticardiolipin antibodies (ACAs) in the sera of patients clinically diagnosed with chronic fatigue syndrome (CFS) using an enzyme-linked immunoassay procedure demonstrated the presence of immunoglobulin M isotypes in 95% of CFS serum samples tested.
https://pubmed.ncbi.nlm.nih.gov/19623655/
 

halcyon

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Examination of anticardiolipin antibodies (ACAs) in the sera of patients clinically diagnosed with chronic fatigue syndrome (CFS) using an enzyme-linked immunoassay procedure demonstrated the presence of immunoglobulin M isotypes in 95% of CFS serum samples tested.
https://pubmed.ncbi.nlm.nih.gov/19623655/
This finding failed replication in a more recent study, finding no difference in anti-cardiolipin antibodies between patients and controls (Nilsson et al., 2020).

Curiously, I tested positive for anti-cardiolipin IgM antibodies in 2019, but when tested again this year I am no longer positive.