I was on warfarin for 10 years after the PE event. I was originally told I would be on warfarin for one year and then be reevaluated. I was reevaluated but my primary care doctor and a hematologist decided I should remain on warfarin for life.

A few months ago, the anti-coagulation people suggested Eliquis (apixaban). We discussed the advantages and disadvantages of staying on warfarin or switching to Eliquis. I was more focused on stopping warfarin and not switching to Eliquis. The entire PE incident was reviewed ad nauseam. My primary care doctor concluded that I might be at a greater risk of having a bleed as I age than having another PE. We agreed that it might be okay to discontinue warfarin. However, he was concerned about the blood flow in my feet. He ordered a test that wasn't a venogram and later called me to say he wanted me to see a vascular surgeon. He said it wasn't a blood clot but I might need a stent placed. He said someone would call me to schedule the appointment with the vascular surgeon but nobody called.

I can see in my medical records that the vascular surgeon was consulted but the surgeon said the following:

Reason for consult:
ABIs; right ABI noncompressible; left ABI WNL bilateral feet are cool to the
touch with mild purple discoloration; capillary refill is delayed
Chart reviewed:
69 year old male veteran with history of multiple autoimmune disorders, HTN, HLD with some discoloration of his bilateral feet.
Recommendation:
Thank you for the consult. I have elected to convert this to an e-consult. I
reviewed the patient's past medical history and ABIs findings. Although the
right ABI is non-compressible, the patient's toe pressure (TP), PVR and TBI are
within normal limit which suggests no large vessel occlusion or stenosis. With
his history of multiple autoimmune disorders, the purple discoloration and
temperature changes may be related to Raynaud's phenomenon. I do not think the
patient needs to be seen by vascular surgeon at this time. Would recommend a
rheumatology consult. If the veteran develops non-healing wounds, lifestyle
limiting claudication or rest pain then would recommend repeating his ABI
studies.
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I don't know what to make of all this. I haven't stopped taking warfarin yet. I'm in Europe and will have a long international flight home. We agreed that I could stop warfarin after my travels and flight home. I'm not sure that I would feel pain in my feet because they have idiopathic neuropathy and are mostly numb.

I really want to stop warfarin. Since being on Actemra (tocilizumab), I have been able to discontinue all my other medications which were mostly to treat Prednisone side effects. I'm off Prednisone and feel better than I have felt in years. I already have a follow-up visit with rheumatology so why should they be consulted? I'm worried they might say that I have vasculitis and I don't need that.

I am on Xarelto too. I think I am definitely a zebra. The last time I went to the rheumatologist, before I left she said "you're an interesting case". Not the first time I've thrown the doctors for a loop.