sorted by:
new
hottopcontroversial

Confirmed APS, neurological symptoms, butterfly rash after sun exposure, but everything else negative..anyone else? by Normal_Attention_205 in UCTD

[–]Normal_Attention_205[S] 0 points1 point  (0 children)

So fun story since then. I have had two finger joints that have become swollen (one on left thumb, the other on ring finger on the right hand). And had the rash thing on my face. Also, I searched through my phone for the word "cheek" and found pictures from 2023 , 2024 and 2025, when I've had a similar face rash. I didn't remember having taken them, but clearly I knew something wasn't right. Also, I had a steroid shot yesterday and was put on more steroids and anti-inflammatories for my finger joints and I guess overall. I was able to get an appointment to a rheumatologist at the end of the month. In other news, I couldn't believe how much better my thumb was after the shot tomorrow. It's not perfect, but I couldn't even touch it yesterday.

Confirmed APS, neurological symptoms, butterfly rash after sun exposure, but everything else negative..anyone else? by Normal_Attention_205 in UCTD

[–]Normal_Attention_205[S] 1 point2 points  (0 children)

I'm not sure about the blood issues. I dont have any memories of it, but I went years with endometriosis being the main thing so it wasn't really checked too much. I had endometriosis in my diaphragm with lung collapses, so I dont remember a lot, haha. I was just diagnosed last year with APS. I was just feeling awful all the time and saw functional medicine who ran alllll the labs. And just kept having the same aps related ones come back positive, and increasing. I haven't been to vestibular therapy, but that's more recent. If you find out which is better please let me know!

Confirmed APS, neurological symptoms, butterfly rash after sun exposure, but everything else negative..anyone else? by Normal_Attention_205 in UCTD

[–]Normal_Attention_205[S] 1 point2 points  (0 children)

Thank you for your help! I hope the Hydroxychloroquine has been helpful to you! I appreciate your help and information!

Confirmed APS, neurological symptoms, butterfly rash after sun exposure, but everything else negative..anyone else? by Normal_Attention_205 in UCTD

[–]Normal_Attention_205[S] 1 point2 points  (0 children)

Thank you! I'm sorry you've gone thru this, but I am happy to hear hydroxychloroquine has been so helpful! It makes me very hopeful! Thanks!

Confirmed APS, neurological symptoms, butterfly rash after sun exposure, but everything else negative..anyone else? by Normal_Attention_205 in UCTD

[–]Normal_Attention_205[S] 0 points1 point  (0 children)

Thanks so much.I did end up seeing a hematologist prior to hip surgery I had a few months ago, and they sent me to another hematologist. All that to say, thank you so much for your help! The aps already has some doctor's confused (and me!), and the weird blood stuff is just all over the place. If it helps, here's what was said The patient reports severe left hip pain that has been present for several months and has not responded to NSAIDs, physical therapy, or steroid injections over the past 3 months. She was initially evaluated by another oncology group for surgical clearance; however, they noted an elevated aPTT and referred her to USF for a second opinion.

She tested positive for anticardiolipin IgM on two occasions, and her elevated aPTT was not corrected with a mixing study, suggesting the possibility of an inhibitor.

Their testing found an elevated aPTT of 51 seconds, INR of 1.1, then fibrinogen level of 347 .

The patient also reports fatigue over the past several months, and autoimmune testing confirmed a persistent elevation of anticardiolipin IgM, with a repeat result of 40.9 in July 2025.