What can I expect with Antiphospholipid Syndrome (APS)?

Thank you for the reply! I just felt guilty going to find a rheumatologist and did not want to step on the hematologist's toes! My husband and kids have been amazing! I am not sure what I would do without them! I just want answers, and to feel better!

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.

You are learning to be your own advocate, the fact that he can’t tell you the plan of care says it all, RUN!
You need an expert in the field of autoimmune diseases not a novice. A Hemotologist has no business treating or testing for autoimmune, it is VERY complex.
You will also be learning about self care.
I follow Mark Hyman from the Cleveland Clinic on Facebook, he produces lots of educational videos on regarding diet, rest and exercise with Autoimmune. Mark is the head of Functional Medicine at Cleveland Clinic which is a part of their program for autoimmune treatment.
I personally use accupuncture, helps tremendously for the fatigue, and massage therapy for muscle and joint pain as well as hot/ cold therapy.
I would email Mark and ask for a recommendation for a good Rheumatoligist and get in there asap. The University hospitals are your best bet.

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.

Thank you for your input! It makes me more concerned and raises more questions, as when I visited with my PCP the other day and she indicated that I don't have lupus, but then got a little sassy when I tried to ask her questions too and she didn't have answers. I do not expect a doctor to know everything, and would be ok if they don't know something, especially as out there as this case. I just want to know what I have specifically, prognosis, and how to manage this for the long term.

Definitely not acceptable. When I was first suffering from PMR, hardly able to walk, felt like my upper body was being beaten by a 2 X 4 24/7, my PCP said she thought it was PMR but she didn't have the expertise to really make the call. She did order basic rheumatology tests which showed an immune system gone wild but she also referred me to a rheumatologist and prescribed 15 mg Prednisone daily to alleviate symptoms until I could see a specialist. I had a lung nodule; in the course of investigating it, my pulmonogist referred me to an immunologist. He ran immunologic panels which indicated a severe issue with them and told me to find an oncologist. I was diagnosed with Smoldering Myeloma on top of the PMR. My first wife had Lupus, we eventually found a crackerjack rheumatologist who was able to help her (this was in the early '80s when the average life expectancy of Lupus patients was 5 years). Sorry for the long winded reply. Please follow everyone's advice, don't let your doctor treat you inadequately.

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.

Thank you! I live between Cleveland and Pittsburgh, and Buffalo is about 2 hrs away. I have always heard good things about Cleveland Clinic in general, so I may be exploring your recommendation. Appreciate the advice and support.