What is Deep Vein Thrombosis DVT
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It commonly affects the leg veins, such as the femo...
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Clotted while on coumadin/have lupus inhibitor
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This was a comment posted by DVTwLI but I thought it would be better as a discussion topic to make sure everyone has a chance to see it.
Hello to all, I am 40 yr old male. I was diagnosed with bilateral DVT in 11/2009. My treatment started with Lovenox (5days) and Coumadin (2.0 mg daily) with the INR = 2.2 -2.8 and things seem to be getting better; however, new year's eve 2010, my right leg was swollen like a memory foam and the pain was unbearable that I can barely walked. I was admitted to the hospital and the new Ultra sound showed new clots in my groin area! The whole treatment was repeated with Percocet for pain. The vascular specialist was consulted but without any insight. I was release after 4 days of bed rest without knowing why the new clots were formed while I was on Coumadin! My Family doctor refered me to a hematologist and after two weeks of waiting for the blood works, my hematologist told me that I have Lupus Inhibitor (Drs don't know why I have this LI) and that was the cause of those new clots and the Inhibitor could cause blood clots anywhere in my body! Both doctors said that the only treatment is blood thinner (they have adjusted my Coumadin dosage to keep my INR close to 3). I had to use the walker to aid me moving around for the first two weeks after leasing from the hospital. The swelling on my thigh is now manageable but now my foot is swollen with pain extended to the right side of my ankle and up to my calf (the walker is now my friend again ...). Seems like the swelling and pain keep moving to different parts of my leg! I am now also taking pain killer (tramadol) almost daily to ease the pain so I can sleep and move around. Is there anyone here have the same condition? Posted on 02/09/10, 01:43 pm |
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hello shilos mommy i have suffered from several clots dvt in the right leg 1st one 4 years ago then 2 years ago i had another clot thay found out that i have factor 5 liden gean mutation was treated with lovonox low weight heprin then on a hi dose of coumidin 8mg a day for the past 2 years just 2 weeks ago i suffered another 2 clots in the right leg not to much swelling but very painfull now thay tell me that i had coumindin failure im now on lovonox heprin 100 mg for life and im now in the process of being tested for that lupis thing and other blood borne cancers well best of luck to you hope all goes well for you
Scott M in new york 
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I have Lupus Anticoagulants and Factor 5 Leiden. The only difference in my treatment is that my INR range is a little higher. I'm supposed to stay above 2.5.
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Thank you ShilosMommy for moving my posting to the correct topic.
Jan, does the swelling and pain move around during treatment? Thank you
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I have actually joined daily strength because my husband died recently - but because I have a son who had 3 DVT's (1st at age 14 - he was in ICU for 1 1/2 wks) I thought I'd look at this site too. My son has factor v leiden, and homozygous for MTHFR mutation and tested positive for the lupus. Drs hadn't seen anyone with both factor v leiden & MTHFR and referred him to a "top specialist" in Chgo. This doctor said the lupus was likely a false positive. She said a blood clot can cause a positive result for more than a year after the clot and coumadin and lovenox definitely cause a positive result - when it actually may not be positive at all. My son tested positive when he 1st got the clot, then after 1 year off coumadin he tested "inconclusive" for the lupus. Because he went from "positive" to inconclusive drs suspected he did not really have the lupus and we should wait longer to have him tested again. (they thought it would go from positive to inconclusive to negative after being off coumadin for a long time) But - he developed another clot and is now back on coumadin for life. This specialist said you cannot really determine accurately if someone has the lupus or not if they are on coumadin. Anyway - this is what we were told. It really won't make any difference in this treatment or not. Also, we were told to stick with the coumadin - not to use warfarin. My son takes usually 10 mg of coumadin, Good luck - my son's leg is permanently swollen but he's doing well now. The first year was tough with lots of leg problems but has gradually gotten better - he's adjusted to it well.
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Coumadin is a brand name for warfarin; however, the pharmacist who dispensed my first prescription also told me to stay with coumadin and not the generic, but when I has my GP, he said it should not make any difference!? BTW I had new clots while on generic warfarin just after a month of taking the medicine.
Mgould, did your son's drs explain the reason why to stay with Coumadin and not the generic? and does the pain move to new parts of his leg or foot?
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Since I've seen you ask a couple of times about whether the pain moves around, I wanted to say that yes, I had pain in parts of my leg post-diagnosis. I pretty much only had severe cramping in my calf and some mild discomfort in my thigh pre-diagnosis. Well that turned into pain everywhere for awhile, then as I recovered I noticed I have certain hot-spots for pain, one being the inside of my ankle, another behind and a little above my knee and another in my pelvis (I literally had clotting throughout my entire leg, hence so many parts of it hurt). All of these areas don't hurt all the time. I think when the pain changes, it might be affected by changes in my activity or positions I've been in.
It's a good question about why to stay on the brand coumadin, though I would be interested in hearing specifically what this specialist said. There are several patients here, though, who have felt better and maintained a more consisted INR on the brand over the generic.
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The reason I am concerning about my pain is before the pains started, the veins at those particular sites kinda popped up like the worms underneath the skin and a fw days later, the whole area is swollen and very painful, even when applying lotion.
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Have you talked to your doctor about that? If you haven't, then you should.
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Scott, my leg isn't nearly as bad as your but the swelling and pain did move around some. At first the pain and swelling was just in the calf. Later my whole leg swelled and the thigh became super sensitive to any pressure. They did another doppler but the clot had not extended. It was some type of inflammation of the vein. It was deep though you couldn't see anything on the surface. I'm 3 months out now and most of the pain is gone. Wearing compression hose really helps me with both the pain and swelling.
I would definitely talk to the dr about your symptoms. With the severity of your symptoms you should be seeing him regularly.
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