Living with Antiphospholipid Syndrome
in Health ·
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?
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?