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Anyone have multiple pulmonary embolisms and autoimmune conditions?
I have giant cell arthritis and Sjogren syndrome since February I have had five pulmonary embolisms two of them have been while I was on blood thinners has anyone experienced this?
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Here is the test name.
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.
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2 ReactionsI 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.
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2 ReactionsI’d prefer to just be plain old me than special!! I truly miss the woman who swam a mile five times a week worked out with a trainer twice, and went to a stretch lab once. Always on the move watching my grandchildren the whole shebang.
I don’t like living on the edge, wondering if the newest dose of blood thinners is going to give me another pulmonary embolism. With most diseases should get a diagnosis of prognosis and treatment plan. We aren’t getting any of it.😳
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5 Reactions@teddyz
Have you had bloodwork to see if you have autoimmune Antiphospholipid Syndrome (APS)? I have the autoantibodies for this and I read it is tied to risk for blood clots. I am seeing a new rheumatologist and pulmonologist because I have had difficulty with breathing deeply since Covid vaccines in 2021 and have the virus/infection in 2022.
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3 Reactions@dadcue
Did you get the Covid vaccines and the infection? I have read how it affects endothelial and microvascular function and well as nervous system. I think the numbness and blood flow issues may show endothelial/microvascular dysfunction. I also have small fiber neuropathy and pain, burning, numbness in feet and calves and throughout my body. It feels like my body is not circulating oxygenated blood well, my lungs are not exchanging gases/oxygen to blood stream well and the oxygen isn’t getting into my muscles which is causing me weakness and severe fatigue. COVID vaccines and infection cause micro clots which affects circulation of oxygen. I need to do more to increase my circulation to my feet and throughout my body and be careful not to injure my numb feet or get cuts/bruises which could increase my risk for clots due to autoimmune anti phospholipid syndrome.
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1 ReactionThat is why the sport I chose is to swim. I do a half hour of walking in the pool and then a half hour of very light swimming. I am also in physical therapy. I hope this helps you a little. I do believe we were susceptible because of our auto immune then we got the infection in the shots and, wound up with the tiny non-occlusive blood clots. Keep me posted. Good luck Murray.
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4 ReactionsThank you for this info. I had a lot of blood work done, but I will see if APS is one of them. I appreciate any input good luck and let’s keep one another posted. Thank you, Marie.
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3 ReactionsI've never even heard of that. I'll add it to the list for my next visit. Thank you!
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3 Reactions@teddyz and @mmorey52
I looked at my autoimmune lab work report from Exagen Diagnostics (in CA) and it shows 4 blood tests under the Antiphospholipid Syndrome Auto-Antiboidies category:
1.
Anti-Cardiolipin IgM (Ref. Range ELISA: < 20 CU Normal, 20+ CU Positive)
2.
Anti-Cardiolipin IgG (same Ref. Range as 1.)
3.
Anti-Beta2 Glycoprotein 1 IgM (Ref. Range ELISA: < 21 CU Negative, 21+ Positive)
4.
Anti-Beta2 Glycoprotein 1 IgG (same Ref. Range as 3.)
Hope this helps. Good luck!
~Dina
P.S. I am going to try the suggestions for swimming “walking” and other water exercises. I am opening my pool this week for my teenage son and I should use it myself for at home physical therapy. Thanks for the idea!
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4 Reactions