I saw a new Rhuemy in December and she noted the net like discoloration of my skin. It gets like that when I get very cold or hot. She told me it may be APS. She asked if I have had any miscarriages. I have never been pregnant. I had blood tests done and am waiting for the results. Has anyone else heard of this?
I was diagnosed with APS alongside lupus. It can also be known as Hughes Syndrome or sticky blood. It means that your blood clots too much. It can cause headaches, brain fog etc. Worst case it could cause blood clots. I now take warfrin to thin my blood. Try not to worry, you will be ok. Your rheumy will get you on the right meds if you do have it xxx
I have APS along with Lupus and other crud. That lacy thing is called Livedo Reticularis and I have that too. I got diagnosed with the APS first because I had a stroke while already on blood thinners for mu heart valve. You can have LR without having APS too, both my wife and daughter have it and yet they don’t have APS.
Yep I have it too but am able to be controlled with aspirin daily
I am a male with APS ..do have the net on my legs ,,also internal thermostat has never been the same since... always cold.. and I live in florida
I’ve heard of it and have suffered a late term miscarriage. I also get that lace like appearance to my skin. I wasn’t aware that there was a specific disease though. I just assumed it went with having lupus…lol
Thanks to APS...4 DVT's in legs in one year and recently after being hospitalized
superficial blood clots in arms (size of a marble) and dvt in chest and underarm...
Does anyone have pictures
robc said:
Thanks to APS...4 DVT's in legs in one year and recently after being hospitalized
superficial blood clots in arms (size of a marble) and dvt in chest and underarm...
I had 3 miscarriages my first was blood clots along the placenta into the babies heart. I was told I didn't show APS in my blood work, but I was put on heparin and low dose aspirin in my other pregnancies. I continue on low dose aspirin still today, per doctors recommendation. I don't know about the cold thing but I am always cold.
I was diagnosed with APS 26 years ago after a successful pregnancy. I became toxic at 35 weeks and had to be induced but my son was fine. They did not "offically" diagnose the APS until a year later when I was so sick they thought they were going to lose me. Thank God that I have a PCP that is very persistant. If not for her I would have died for sure. I now have a complete team of doctors that follow me very carefully. I have had a TIA, and emboli in my lungs following a surgery. I am in stage 3 CKD (stable with meds) and I have had a mitral valve replacement (mechanical). I also have the Livedo Reticularis and within the last 2 years my hair started falling. 2 summers ago I was diagnosed with Sojgerns Syndome. My son has been tested and he is negative. I now have a grandson and I am encouraging my son to have him tested when he gets older or unless he shows symptoms of autoimmune. I understand that it skips a generation even though I do not know who I inherited it from. And to make all the matters worse I have RHO Negative blood. I cannot receive just any blood. If this becomes your diagnosis please don't despair. Work with your PCP and if you feel he/she does not seem to be interested move on to another. Like I said I have a great team of doctors that take interest in me. Including my Rhuemy. I do not know where you live but I live in New Orleans and the doctors at Ochsner Foundation Hospital are the best. I hear Mayo Clinic is a great place also for autoimmune but I have no access to go there. Good Luck take care and God Bless. Please don't get discouraged. Feel free to email me anytime... I've had a lot of experience in many aspects of APS.
I have Antiphospholipid Antibodies. I had 10 miscarriages & a 28 wk premie. Tested positive for APS during a work up for Lupus. You can have APS but not Lupus. I take low dose ASA daily. I use to take Plavix. I also have Raynaud's, discoloration of skin when cold.
Yes, I recently tested positive for the Lupus Anticoagulant and I take one baby aspirin at bedtime daily. This test was ordered after I complained of my arms going numb and tingling. Rheumy noticed lacy look on my arms.
I used to take a low dose (81 mg) aspirin along with my Coumadin until I had a GI bleed.
Aspirin thins your blood and any good pharmacist would tell you not to take them together it can be deadly
I am hoping on hearing from my Rhuemy next week. With the holidays she hasn’t been in the office. I am also always cold. I have a heater under my desk at work as I freeze all day. I also wear long underwear everyday. I am absolutely ready for winter to be over.
I tested positive for anti-cardiolipin antibodies when I was first tested for lupus. Even if you have the antibodies, I think they don't generally call it APS unless you have had an incident of clotting, miscarriage, etc., but they do like to use preventative measures such as baby aspirin or blood thinners.
As another poster said, what you describe sounds like livedo reticularis, which I also have. It is common in SLE.
I was surprised when my Rheumy called today. All the blood tests for APS and SLE came back negative. She said I have mixed connective tissue disease but wants to hold off on changing my meds until I see the dermatologist since my Lupus is skin based. Thank you everyone for the great info and support. It is great to be able to talk with people who understand and can give you advice!
Jaycee-my Rheumy did say anything about it. I see her in a couple weeks and will get some more info.
Heather Hicks, I have been on both Aspirin and Coumadin since 2008. I had a stroke while on Coumadin with an INR of 3.0 Some people need to be on both. I’ve seen my blood clot in the tube while they were taking it from me, so they had to switch arms and stick me again. I have the Lupus Anticoagulant. I am male with APS and Lupus and other crap. I am not sure if having the LA affects people differently that having the Anticardilipids etcetera, or being male plays into it since testosterone makes the blood thick too.