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So it is possible that I have another chapter to add to my warfarin and clot saga ... possible necrosis.
For about three weeks, one of my toes on my left foot has been bothering me. Painful to the touch, swollen, and (most recently) bright red with dark spots. Last week, a toe on my other foot started with the same symptoms.
Went to the doc today, thinking I had some sort of infection and she thinks it could be either Purple Toe Syndrome or the beginning of Warfarin Necrosis. Both could result in dying skin and the loss of my toes.
It is weird because both of the options are super-rare side effects of warfarin (she'd only seen Purple Toe once before) and they usually happen within a month of starting warfarin ... and I've been taking it for two years now.
To be safe, she's put me on antibiotics and referred me to a vascular surgeon, but I'm wondering if anyone here has dealt with such an issue? Symptoms? Results? Advice?
(I cross-posted to the PE group too...)
For about three weeks, one of my toes on my left foot has been bothering me. Painful to the touch, swollen, and (most recently) bright red with dark spots. Last week, a toe on my other foot started with the same symptoms.
Went to the doc today, thinking I had some sort of infection and she thinks it could be either Purple Toe Syndrome or the beginning of Warfarin Necrosis. Both could result in dying skin and the loss of my toes.
It is weird because both of the options are super-rare side effects of warfarin (she'd only seen Purple Toe once before) and they usually happen within a month of starting warfarin ... and I've been taking it for two years now.
To be safe, she's put me on antibiotics and referred me to a vascular surgeon, but I'm wondering if anyone here has dealt with such an issue? Symptoms? Results? Advice?
(I cross-posted to the PE group too...)
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I would tend to think more so purple toe syndrome rather then Warfarin induced skin necrosis (I know someone who lost their leg because of this).
Here are two articles about each condition:
http://patientblog.clotconnect.org/2011/03/29/warfarin-induced-skin-necrosis/
(warning, pictures pertaining to Wafarin Induced Skin Necrosis are graphic and does show body parts)
http://patientblog.clotconnect.org/2011/03/29/purple-toe-syndrome/
Warfarin induced skin necrosis is usually recognized too late near the beginning of warfarin treatment (when high dosing it required to get the member therapeutic too fast).
Of course, I'd rather it NOT be connected to the warfarin, cause then I'd have to be on shots the rest of my life.
Hopefully, the surgeon will have some ideas or input. In the meantime, I too will hope that it is a "one-off, weird thing."
Thanks again!
When the doctor switched me over to brand-name Coumadin within a week I started feeling better as the allergic side effects went away and the generic got out of my system. My toes were getting a bit purple but it went away and they are fine now. The reaction I had to the generic med seemed to cause more damage than the DVT! I hope you come out ok.
I have a wild idea - it isn't very severe chilblains, partly caused by the poor blood flow, is it?
I get purple swollen sore toes with bright red on them, and also huge purple & red patches - almost the size of a cd - on the outsides of my thighs, and the surface skin peels off, and I've been told it's chilblains.
They throb, sting and itch, but improve in the summer.
Saw the vascular surgeon yesterday. He was very thorough and did an ultrasound of both legs looking for arterial clots and/or aneurisms that could be causing issues with the toes. Found nothing. (Side note, I did pick the ultrasound tech's brain since I didn't have an ultrasound after my PEs in 2010. My clots from 2005 and 2009 are still there and very stable. No sign of other clots in either leg and no obvious scarring.)
So, the upshot it that the vascular specialist doesn't know what it is. He doesn't think it has anything to do with the warfarin because it doesn't look like Purple Toe or the necrosis he has seen in the past. This is a good thing!
His feeling is that he has ruled out anything life-threatening so he isn't too worried about it. He said I could see a dermatologist if I wanted, but didn't seem to think it was critical. I did ask about chilblains (thanks for that idea!) but he didn't think that was it either.
So, I dunno. It is still there and still pretty minor. I have spots on three toes now (it was two when I first posted). The one earliest affected seems to be feeling better (less pain) although the spots and redness are still there.
My husband feels like I should be fairly proactive and seek out either a dermatologist or podiatrist. He thinks if it is causing pain, I should do something about it.
Of course, I'm tired of doctor's appointments and I'm kind of ready to just let it ride for a while unless it gets a lot worse. The pain is minor and only shows up when I'm walking on hard floors, so totally liveable. Maybe I'll be more proactive in a few weeks, but I'm really just tired of new things popping up.
Anyway ... the update is that we still don't know, but they don't think it'll kill me.
Dee