Antiphospholipid Syndrome

*What are antiphospholipid antibodies?Antiphospholipid antibodies interfere with the normal function of blood vessels. They typically cause two kinds of problems: narrowing and irregularity of the blood vessels (vasculopathy) blood clots in the blood vessel (thrombosis). These antibodies react with proteins in the blood that are bound to phospholipid, a type of fat molecule that is part of the normal cell membrane. These blood vessel problems can then lead to complications such as stroke, heart attack, and miscarriage.*

 The day I found out I had Lupus, I also learned I had antiphospholipid syndrome. My physician was surprised that I had been pregnant with no complications and had been able to carry my daughter to full-term. I was told that I needed to take a baby aspirin every day, and warned that it would be unsafe for me to get pregnant again. Because of APS I would be at risk for a miscarriage at any point in the pregnancy. I would be putting the life of a child as well as my life in danger. I really had no idea how severe APS was and honestly I didn't care at the time. The only thing I really heard was "You have Lupus". 

   I didn't take the pregnancy warning seriously because  I really wanted other children. We tried for several years to have another child; however we were unable to conceive again. In my opinion it is by the grace of God that we were unable to get pregnant again. I didn't fully take the complications being pregnant would have caused. At the very least I would have been on bed rest with anticoagulant injections or IV's. The worst it would have been losing the baby or having to make my husband chose between my life or the child's.

 Eventually I stopped taking the aspirin. I couldn't really remember why I needed to take it so I stopped. It wasn't to long before I developed an ulcer on the little toe of my right foot. It wouldn't heal no matter what I did. My right leg was cold all the time and always felt like it was falling asleep and hurt when I walked. My calf would cramp whether I was walking or sitting. It got so bad that within a month I could no longer wear shoes. I had to wear cloth slippers to work. My PCP at the time didnt take my symptoms seriously. My little toe was much worse also. When I took the band-aid off it you could the bone in my toe. Since my PCP was on vacation I had to see someone else. I lucked out because the covering physician took one look at my toe and said he was pretty sure he knew what the problem was.  

I was sent to a specialist right away. They found a blood clot in my right femoral-popliteal artery. My blood counts were all over the place and it looked like I had a raging infection but they couldn't find where the infection was coming from . I was in the midst of a big nasty Lupus Flare however they put me on IV antibiotics for a few days as a safety precaution.  I had to have a femoral-popliteal bypass at 28 years old to not only save my leg but also my life.  

  I  am on the blood thinner Coumadin for life. It is an anticoagulant that will keep my blood "thin" so clots do not form. Coumadin is a tricky drug as it can be hard to get your dosage regulated and stay regulated and it requires monthly labs. Blood thinners are a complete game changer I have to careful with any new medications I am prescribed and any new foods or drinks I introduce into my diet. Any of those can have an adverse effect on my PT/INR levels. I also watch for cuts and scratches, if I start bleeding I may not be able to get them to stop. I've learned to take every aspect and complication that comes with Lupus seriously.

 

 

 www.lupus.org *

Comments

[Mary Bowman]

so scary. I am so glad it turned out good for you. If people only knew what we have to go through when you have lupus. I am 43 yrs old and cannot work because of lupus and all the complications its caused and I have diabetes and in last 3 months it has caused arthritis in hands, back and neck so bad I can hardly do anything.

[Shalonda Garcia]

Mary I'm sorry you unable to work. I hope the arthritis gets better. Education is part of why I blog. Thank you for reading it and telling YOUR story.

[RayShonda]

Oh wow...going to take my baby aspirin right now!! I take it every now and then and I take the other medication once a day instead of twice. (plaqunil) Jesus...glad you are ok. I gotta be more compliant with my meds.... thank you for sharing!

[Shalonda Garcia]

RayShonda- Please be work on being compliant with your medications. I use myself as the example of what NOT to do!
Believe me my medication is a part of my routine - just as putting on my makeup. I do it so much now I don't even have to think about it anymore.

[john]

i know the feeling i got sick in 2005, as doctors were searching for what was wrong (a lymph gland biopsy first.. inflamed lymph glands all over my body led them to suspect cancer), not long after the biopsy i suffered a heart attack.. troops of specialists where brought through my room only the rheumy suspected lupus and he was right i was diagnosed with sle, antiphospholipid syndrome, and rheumatoid arthritis .... in the last 7 years added to the list osteoporosis and chronic heart failure .. most of the meds are yuck and don't seem to do much so i smoke pot as well :)

[Shalonda Garcia]

John you're the first man with Lupus that I know of with antiphospholipid syndrome. I'm sorry you have had such a hard time with being diagnosed. Does the pot help with your pain? How did you feel when/if you were taking pain meds vs marijuana?

[Jenn]

I also have SLE and APS as well as fibromyalgia and sjogren's syndrome. I have to test my PT/INR levels twice a week on an at home monitor. My Coumadin levels are constantly changing and when my INR is low I have to give myself shots in the stomach of Lovenox. It's so frustrating, but I have had pulmonary embolism three times. Very scary.

[Shalonda]

Jenn
You're right, APS is very scary! For me it's scarier than the fact that I have Class IV nephritis. Because the consequences are more immediate if there is an issue with coumadin levels or another clot.