Last updated: March 2023
Antiphospholipid antibody syndrome can be a tricky condition when it comes to dealing with lupus. Why? It occurs when your immune system mistakenly creates antibodies that make your blood much more likely to clot.
For the past few years, my antiphospholipid factor has been active, but I have not retained a blood clot too recently. When it was active and I was on Xarelto, my menstrual cycles were horrible. The pain was excruciating, and I was extremely tired all the time. Not to mention during this time I was always on a chemotherapy drug. When blood clots reach the arteries and veins, they become very painful to where sometimes it is hard to breathe.
My experience with antiphospholipid syndrome
Mine mostly occurred in my lungs and legs when I retained fluid and could not breathe most of the time. This made my condition more serious than it use to be. According to the Lupus Foundation, when blood flow to the lungs is blocked, lung tissue dies. Having a blood clot anywhere near important arteries can really take an effect on your body and makes your health condition more serious, and doctors might have to carefully monitor you.
When I went to see my rheumatologist, they informed me of the troubles of having birth with having a blood clot. The more issues arose, the more I felt that I could not maybe have children. Some things they included were miscarriage, stillbirth, and pre-eclampsia. I had gotten off Xarelto 6 months before I got pregnant and had to start to back when I found out I was pregnant just for the protection of my daughter and smooth birth. During birth, I was placed on heparin and those shots burned. I also was told to take a low dosage of aspirin to help with blood clot issues.
I took steps to lessen my risk of blood clots
To help lower my risk of catching more blood clots, I quit smoking recreational and started to eat healthier. I was on a low-sodium diet. I stopped eating beef and pork and also went on more of a gluten-free diet. I could not get birth control because of the blood clotting so I had to be very cautious when it came to protecting myself. Other signs I had made it more obvious. They included shortness of breathing, coughing up blood, and sharp chest pains. Thrombocytopenia also comes with having this condition. It is when you have a low platelet count and as it falls, it causes bruising, round spots on the skin, nosebleeds, and more.
According to the Lupus Foundation of America, we can have antibodies against both red blood cells and platelets. I was put on medications like Protonic and Carafate to help with the vomiting blood and then the Xarelto, which they said I might need to be on long-term. You cannot eat certain foods on Coumadin, so I did not want to be placed on that. Now, I am in a better place and have not been on those drugs for 4 years. I just reflect on certain days on how far I became and how I use to be.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?