Hi, I was diagnosed with APS in 2020 prior to a surgery as an incidental finding.
I am going in for a hip replacement sooon, and they repeated the tests and confirmed the diagnosis
Questions:
could I remain asymptomatic?
what should I watch for?
Help!
You don’t mention if you were given any treatment for your APS after it was diagnosed. All I would advise if you are having a hip replacement is that your surgeon should have a coagulation plan from your heamatologist as you will be on heparin injections for awhile after the surgery anyway.
Good luck with the surgery.
The coagulation plan is ESSENTIAL. You may be able to get by with Lovenox injections, but you need to express your situation with BOTH your surgeon and your hemo. Good luck with all, esp. the surgery.
Thank you!
I have never been treated, so I was wondering if anyone has the same situation. Yes, hematology is working with the surgeon. Lovenox.
Hip surgery sounds like a big deal, but compared with other surgeries, its really not. if your orthopedist and your APS doctor coordinate you will bridge to and from surgery. Do some presurgery exercises. Make a list of your questions and concerns for your docs to address. Ask if you qualify for physical and occupational therapy and take them if you can. After my hip surgery I was 100% back to normal within a couple of months. Pain free sleep? Yes! Worth it! ( though that night pain moved down to my knee which I had to replace a few years later.)
just so you know it is common per Dr graham Hughes that APS causes symptomatic and asymptomatic avascular necrosis of the femoral head (death of the head of the hip bone) the only treatment is replacement. So just know APS could be causing hip issues. I just prayed for you and your surgery.
Thank you.
it sounds like you have APS findings in your blood work - but have you had a qualifying clinical event? I have APS findings in my blood work - discovered when I did my prenatal blood work. At that time, I was not treated for APS, as the medical team didn’t seem to take notice. I had a healthy, normal pregnancy and birth.
11 years later, I had a stroke, and I pointed out to my medical team the APS findings in my blood work. They thought APS caused my stroke, but it actually was attributed to another rare diagnosis , Carotid Web. I spoke to an APS specialist who let me know that some people test positive for APS but they never have a clinical event.
The people in this forum are more knowledgeable than I about APS, and your Doctors always have to err on the side of caution. They were aware of the APS findings when they did surgery for my stent - to treat the Carotid Web - and loaded me up w heparin to prevent a clot. It’s difficult with an APS diagnosis as many people don’t know much about it. This people in this forum are very informed.
Thank you so much!
to have APS you need a clotting incident or multiple miscarriages plus two positive APLS test 12 or more weeks apart. You have only antibodies it seems so no treatment was necessary.
It is standard practice for all people having hip or knee replacement to have preemptive and post opt blood thinning treatment to prevent clotting so you should be fine. Good luck.
thanks for the respnse.I have had multiple tests and carry the antibody. I am not asking for advice on what blood thinners or how much I should take, that is for my hematologist and surgeon to decide. My question was regarding remaining asymptomatic.
no one can predict that. There is a second hit theory that it takes more than just the antibodies to trigger the clots or issues but second hits can be infection, diabetes, trauma, cancer, high cholesterol etc. Most specialists do not worry about any other symptoms other than clotting.
My advice is for you to get referrals to APS specialists in your area. This forum can help w that. Then, I would get a consultation with the APS specialist. They are very knowledgeable.
I am located in Ocala Florida if someone knows of a good one. I currently see a hematologist.
My elder brother has a good knowledge about APS since I too have this, drop him a mail on rd.1221@gmail.com.He has researched extensively on this though he is not from medical profession.
Refer me. I am his younger brother from bangalore, India.
Regards
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