Living with Antiphospholipid Syndrome

Donna Lopez79 said:Sir,

I'm having trouble uploading the photo of my lab results. It would be easier if I could just send them directly.
Instead, I'll try to transcribe everything here.

Ma'am,

Based on what you've written, I have to agree with the doctor—this warrants a consultation with a rheumatologist. The combination of these specific lab findings and your clinical history points toward a potential systemic rheumatic disease, which needs to be ruled out. At the very least, I would suggest getting a capillaroscopy, though other follow-up tests are likely necessary as well. This doesn't guarantee a diagnosis of a rheumatic condition, but given these results, seeing a specialist is essential.

Maria Fisher46 said:Look, lady,

based on what you’ve shared, I have to side with your doctor here—you really need to see a rheumatologist. Given the cluster of your test results and your medical history, we can't rule out a systemic rheumatic disease. It’s a possibility that needs addressing. At the very least, I’d suggest getting a capillaroscopy done, and probably some other follow-up tests too. This doesn't guarantee a diagnosis of rheumatic disease, but with findings like yours, having a rheumatologist monitor the situation is non-negotiable.

Hey there,

I just left my neurologist's office. He gave me a referral for blood work and told me to switch from Marc Maron to Eliquis. I've got an ultrasound scheduled for my neck vessels at the end of July. 🤷🏼♀
Then, in August, I’m heading down to Miami to see an immunologist/rheumatologist.

Thanks for all the help so far. I'll check back in with you later.

Hey, just joined the group...

Last month, an immunologist finally diagnosed me with APS.

Since last September, it’s just been one thing after another: a broken leg, a dislocated knee, surgery, catching COVID right after being discharged from the hospital, then a pulmonary embolism a month later, followed by a DVT the next month... it was just this constant chain of complications.

We ran some tests after the PE, and about 12 weeks later, my N/A levels came back elevated, though everything else was negative.
After starting on N/A and N/A, my cardiologist switched me over to N/A. Then in December, they swapped the med to N/A. In January, I retested and saw an additional increase in my IgG to 72, while the rest of the results stayed negative.

Following my immunologist's advice, I moved to a combination of N/A and N/A. Now I'm finally just on N/A at doses of 3.5 to 4 tablets based on my weekly schedule, but my INR just won't get above 2...
I've been getting blood drawn every 3 or 4 days, but they finally scheduled me for a week out because I managed to push it up to a 1.98 INR...

They have me monitored during transfusions, and they seem baffled by how much everything has spiraled.

Because of the meds I'm on, there's a lot of stuff we can't really verify or rule out, like testing for lupus, thrombophilia, and things like that.

One thing is certain—my Factor VIII is high, around 250%, and they're monitoring that closely.

I'm wondering how long I should wait before repeating blood work, and if an elevated IgG could be temporary—like, maybe just a side effect of everything I've been through?

I mean, I've definitely gotten used to the meds, the shots, and all the doctor visits... but yeah, it isn't exactly fun.

How are you guys dealing with all this?