Connect
← Return to What can I expect with Antiphospholipid Syndrome (APS)?
Discussion
What can I expect with Antiphospholipid Syndrome (APS)?
Autoimmune Diseases | Last Active: Aug 13 1:09pm | Replies (191)Comment receiving replies
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.
Replies to "Hi Everyone, I am the mother of a 20 year old male that was just diagnosed..."
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.
Connect
@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