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!

[GinaD]

Are you able to consult with a doctor who has experience treating APS? Getting a formal diagnosis is step 1. Step 2 is finding the treatment that works for you. We are all different and the meds that work for one patient may not work for another. Many who post on this site are stuck waiting for that step 1 formal diagnosis. In this interum, I will point out that our pioneering doctor, Dr. Graham Hughes, noted a strong correlation in APS patients between APS and unrecognized gluten sensitivity. Indeed, though I am still on warfarin, all my APS blood tests went from high positive to totally normal after I accidentally discovered that I was eating something I am allergic to every day. : The gluten in wheat flour and the hops in beer! While you are stuck waiting to pass Step 1you might consider trying a gluten free diet. But, if you do have gluten sensitivity/ allergy, your future APS blood tests may come back normal. Which could mean you have self-treated for APS, or that you will remain in Step 1. Good luck!

-- Gina in the lovely now snowy mountains of West Virginia

[shinyeyes]

I have primary aps. I have issues with absorbtion and I now have idiopathic intracranial hypertension. As far as I know I don't have any other auto immune disorders yet. I am always super cold. I have really bad rashes/excema on my face if I let it go without cream too long. Bc of the absorption issues it was impossible to manage my warfarin even causing my team to od me once where I needed a plasma transfusion. That was kinda gross. And the lovenox shots are hell if you don't have anywhere squishy bc the needles not small. I've had 2 pregnancys both born early but earliest 34 weeks. He's now 18 no issues. However after having him I wouldn't stop having bleeding issues for years and needed my uterus removed. I needed my gallbladder removed. I'm a former smoker and I have COPD at 39. I have cysts in weird places. There are changes to my liver. I've had I dvt in each leg which had led to deep vein insufficiency. That means the valves in my legs don't carry the blood back up to my heart and it just pools. This disorder is hell. I guess I have nice teeth tho🤷 my grandma had issues with clots, my mom had issues, it was first diagnosed properly with me and being primary aps. My daughter has not yet come up positive for it however she could still be a carrier and pass it. Men are less likely to get it, however I'm not sure if my son could pass it down if he has a daughter. I was diagnosed end of 2022. I just switched from warfarin which is rat poison to elequis. Which is probably a safer form of rat poison today. If I fall and hit my head it's still a trip to the er. Best of luck. Hopefully you find some answers and feel better🫶🏻

[nmousdic]

The ultimate elimination diet is the Carnivore diet. Try it for 3 months strictly. Search on youtube Dr Ken Berry and search for his 101 presentation about how to go bout this. You might want to search for Michaela Petersen who talks about the LION diet that saved her life from multiple heath issues for inspiration!!!

[MaryF Administrator]

Hi, it is important that you consult fully with a doctor or consultant who fully understands Hughes Syndrome/APS, and also the often missed conditions that go with it such as B12 deficiency which is often part of having a Thyroid condition. Both Thyroid and B12 deficiencies can add to problems with circulation. It is important that a very detailed panel of tests is done to check your Thyroid and B12 status, also some also have Sjogrens also as an added complication. It is also important to make sure your Folate, Ferritin and vitamin D are at the right levels.

Simona Caraiola: A specialist in the Fifth Department of Internal Medicine at the Faculty of Medicine of “Carol Davila” University of Medicine and Pharmacy in Bucharest

Laura Voicu: A specialist in the Internal Medicine Department at Colentina Clinical Hospital in Bucharest

Alina Dima: A specialist in the Rheumatology Department at Colentina Clinical Hospital in Bucharest

Florentina Negoi: A specialist in the Department of Rheumatology at Colentina Clinical Hospital in Bucharest

Andreea Radu: A specialist at Sfanta Maria Clinical Hospital in Bucharest

Stefan Cristian Dudu: A specialist at the “Victor Babes” Clinical Hospital of Infectious and Tropical Diseases in Bucharest

Anca Ciobanu: A specialist at Filantropia Clinical Hospital in Bucharest

Gheorghe Peltecu: A specialist at Filantropia Clinical Hospital in Bucharest

George Iancu: A specialist at Filantropia Clinical Hospital in Bucharest

Radu Botezatu: A specialist at Filantropia Clinical Hospital in Bucharest

Nicolae Gica: A specialist at Filantropia Clinical Hospital in Bucharest

Anca-Maria Panaitescu: A specialist at Filantropia Clinical Hospital in Bucharest

MaryF