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What can I expect with Antiphospholipid Syndrome (APS)?
Autoimmune Diseases | Last Active: May 16 11:41am | Replies (188)Comment receiving replies
Hello! I am a 34 year old female. My story starts in November of 2022. I had underwent a right shoulder arthroscopy due to what was thought to be a rotator cuff tear resulting from a COVID-19 vaccine. The surgery itself went as planned, however about 1 week later I developed pain in my left calf and was then diagnosed with a DVT and placed on Eliquis. Puzzled as to why a low risk patient developed the DVT, I was referred to a local hematologist who ran a series of blood tests. He called me on a Saturday morning to inform me that I need to switch from Eliquis to warfarin, and that I have antiphospholipid syndrome and lupus. I have other symptoms that may be related. My family doctor said I do not have lupus. When I asked the hematologist who will manage the lupus, he said he would, however when I have asked questions on how it will be managed, he would not answer this. He is a nice provider, but should I seek out a rheumatologist for second opinion? Researching these conditions on my own is overwhelming, as well as trying to recover from the surgery, adapt to warfarin and monitoring, as I was told ill be on it for life. I feel exhausted, depressed, anxious, and worry that I will be a burden on my family. I appreciate any input or advice.
Replies to "Hello! I am a 34 year old female. My story starts in November of 2022. I..."
Agree with everybody above don't stop till you get the answer, my daughter went thru the same process of finding the correct Dr. For her autoimmune disease. It just happened to be a immunologist. Keep pushing and best of luck.
Does anybody have antiphospholipid syndrome? I would like to hear what it is like to live with both short term and long term.
Good morning.Very sorry to hear about your diagnosis but I have APS five years now.Of course no one understands how frustrating this can be You definitely need to see a Rheumatologist.I’m on warfarin and monitoring that with the greens it the most horrific lifestyle for me .Most of the time I’m overwhelmed but it could be worst.I’m now on Plaquenil too .Honestly for me it’s doesn’t help.APS is very difficult to accept for me .I wished you all the best and seek a Rheumatologist soon .Good luck.
Hello @lindzchic24 and welcome to Mayo Clinic Connect.
I found an existing discussion on the topic of Antiphospholipid Syndrome so wanted to bring in your post. You can find it here now:
- What can I expect with Antiphospholipid Syndrome (APS)? https://connect.mayoclinic.org/discussion/aps/
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Absolutely get in to see a Rheumatologist, autoimmune is their area of expertise!
Go online to a teaching hospital website near you and read the bios of the MD’s, get the MD with the most experience AND good ratings.
And most of all, you will be okay on your own! if your family isn’t supportive find that one friend who is there for you.❤️