Joint pain fatigue and red lacy rash on chest and neck

[Turner71]

Hi I was diagnosed with aps in 2015. I'm now suffering with joint pain fatigue that just dissent go away no matter how much rest I get and have a red lace type rash on my chest and neck. Anyone know if these symptoms are part of aps please

[Jmiller623]

Hi Turner! Some people do get such symptoms with APS. Anticoagulation is usually adjusted based on symptoms/clots. Are you on anticoagulation and do you have a hematologist/rheumatologist? They can best help decipher what’s causing your symptoms.

If you’re worried about your APS transitioning to systemic lupus, this does happen to about 30% of primary APS patients.

A better forum to best answer this question is Hughes Syndrome - APS. This is also on HU. Hope this helps and hope you feel better soon!

[Paul_Howard Partner LUPUS UK in reply to Jmiller623]

Hi Jmiller623 , may I ask where you obtained your figure of 30% of people with primary APS later developing lupus? That seems very high compared to studies I have seen.

[Jmiller623 in reply to Paul_Howard]

Sure! I do stand corrected! My data comes from an excellent figure posted by KellyInTexas on Hughes Syndrome forum. I can’t post the textbook Venn diagram but it says...

30-40% of SLE patients are aPL positive. I think this is where I got mixed up.

Over 10 yrs.....

5% of those with APS will go on to develop SLE (you are correct).

50% of those with SLE will develop APS.

Thanks for the correction Paul!

[Paul_Howard Partner LUPUS UK in reply to Jmiller623]

No problem. Thanks for confirming

[Paul_Howard Partner LUPUS UK]

Hi Turner71 ,

Have you spoken to your doctor about these symptoms? APS is an autoimmune disease and it isn't that uncommon for people with one autoimmune disease to develop others. That being said, APS can present with quite a range of symptoms. Have you Googled livedo reticularis? These types of rashes can be common in APS and can have the 'lace' type appearance you describe.

[Jmiller623 in reply to Paul_Howard]

Hi Paul! I also get a lacy looking rash beyond livedo. I posted a picture of this some time ago but it almost looks vasculitic or like telangiectasia macularis eruptiva perstans. It was all over my chest and neck. Responded really well to antihistamines and told it’s lupus related. It’s really rare for livedo to affect the chest and neck (please don’t consider this correction payback 🤪. I love pointing out some marked livedo). I’ve been covered head to toe in livedo and it usually stops at arms and abdomen.