What can I expect with Antiphospholipid Syndrome (APS)?

Sarah L Davis is out of Mankato and Owatonna clinic. She is a Reumotologist
nurse practioner. She is very professional and good.
Good Luck.

Hi Everyone, I am the mother of a 20 year old male that was just diagnosed with Lupus Anticoagulant Syndrome. He went to the hospital because of pain and shortness of breath after a cross-country flight. Sadly they found 2 small pulmonary embolisms but no direct cause. After full body scans and weeks of blood tests, his hematologist gave us the diagnosis last evening and are all reeling from the news (he failed the initial Viper Venom test and the Confirmation). From what I've read, this is not a common diagnosis for a male or such a young person. Does anyone have experience with a doctor / team of experts that can assist us with a second opinion and confirmation that he is on the right treatment path? He was on Eliquis from the hospital but was switched to Warfarin last night by his hematologist. I know there are many negative side effects of Coumadin so want to make sure we have exhausted all possibilities for treatment. Apologies for the long note, we are just very scared and overwhelmed. Thank you.

@hopeful2023 I tried to send you dm but i cannot. I was just diagnosed with APS. I have simular situation with your son and I can feel how stressful you are..
I start to consult specialist in rheumatology and having Pradaxa as treatment.
Please discuss if you want to

Hello, I’m so sorry you’re going through this very difficult experience with your son. I can’t imagine what my mother is feeling going through this journey with me as well. It’s very much this can’t be right and a lot of maybe they got the wrong chart… but once I reached acceptance. Yes, it’s very rare let alone in men. I feel it’s rare because they make it very impossible for diagnosis. Once someone has had a what they call a “catastrophic event” meaning, pulmonary embolism, strokes, or clotting of any sort. And after the hematologist will retest you 12 weeks apart to confirm. Some will have lupus with APS or a mix of anticoagulant disorder with something else. Since he’s experienced an event and it’s positive. Warfarin is usually the best treatment for him. All the other treatments would still put him at risk for thrombosis risks. I know it takes a lot of getting used to. But always in your heart if you’re not at ease get 2, 3, 4 as many opinions as you need. To feel better about what is going on, to put your mind at ease. Because you and your son are the biggest advocates for his care now. One thing that helped me. Was obviously the support of my family. And they have Facebook groups if you on check. They can be very helpful. I hope all goes well for you guys and you get all the answers that you are seeking. And I wish your son all the best. And take care of yourself because you can’t take care of him if you can’t do that for yourself.

Thank you so much for your words of understanding and support. We received the diagnosis on Monday, I allowed myself to cry on Tuesday, then I started taking action on Wednesday. Feels better to be proactive than reactive for sure. Like you, we kept thinking there has to be a mistake. But having accepted the diagnosis, I'm now looking for 'centers of excellence' that will review all of my sons tests (and do more as needed) to get a complete picture of his diagnosis, long term prognosis, suggested treatment options, and a realistic plan for how a 20 year old very active male (skateboarding, snowboarding, car racing) can enjoy a balanced life. I'm afraid if too restrictive, he will not follow the plan completely and the result could be bad. I see that some of the big university research centers/hospitals have a special focus on Lupus Anticoagulant Syndrome and hope to find a good good program and have him evaluated soon. Again, thank you for response, very much appreciated!

My sincere thanks for reaching out. It's hard for me to write about my son, so I can only imagine how difficult it is to write about yourself. Curious, do you have APS as a primary or secondary diagnosis? Per my son's hematologist, they will do more tests to look for sign of Lupus, but at this time he does not suspect that he has it. Of course from what I've read that could change with time, but at this point they are focused on just the APS. Hence the initial direction toward Hematology, but I'm wondering if we should also be pursuing consults in Rheumatology?

Of course, I know the feeling. And the unknown is very scary. Limitations are somewhat different, life is a little different. I know flying you have to be therapeutic for a month and be okayed prior. I was very active, multitasking and took on multiple things at once. No longer, brain fog and fatigue doesn’t help but I don’t let it get in the way for the most part. Activity I believe he can do things but with precautions of course especially with INR therapeutic. Michigan state is doing a lot of current research on APS if it interests you. UK has most information. You’re doing amazing and on the right track. With a mom like you he’ll be just fine. Stay positive and enjoy him and take it easy. I was just diagnosed in August. I’m learning to just go with the day and enjoy each moment. Can’t focus on what we can’t fix tomorrow, because tomorrow hasn’t arrived. Best of luck and many hugs your way!

I have APS as a primary diagnosis. But i believe they will conduct more experiments for lupus just like your son. I have a very simular condition with your son, as i am a man with just a few years elder than your son, Active also, I used to play soccer every Sunday.
I am not sure Pradaxa is the best medicine for me as I have CVST as the first Symptoms I have.
The doctor says they prefer this as they could have reverse medicine for Pradaxa.
I have booked for a consultation of Rheumatology in March and I hope everything will get more clear.

Hello, hope your day is going good overall. Every day will be different. Unfortunately I’m not too familiar on that medication. I’m on warfarin and that comes with its own ups and downs. Overall for the syndrome. You can have exhaustion, nausea, headaches, hair loss, even anxiety. If you already didn’t have those. Of course medicine will have its benefits with its take backs. But it’s for life so it’ll take some getting used to. Whatever happens, don’t overwork yourself, rest when you need to, don’t stress on things you can’t control. You’re indefinitely your medical advocate. So if something feels off, it is! Don’t be afraid to speak up! Don’t wait and you’re never exaggerating. It’s better to check than to wait. I know it’s scary and more so because they don’t have a lot of information. What’s helped me is morning sun before 9 am, rest, I and FB has groups for us. Although not many just helps to know you’re not alone. And there are those there that actually do take your medication with the same condition. So it’s more relatable.

Thank you for sharing your thoughts and experiences.