Deep Vein Thrombosis (DVT) Support Group

My hands and feet are cold most all of the time on the cumadin. My toes used to turn the colors you are talking about until I started wearing the compression hoses. I also have chronic venous insufficiency, which means the blood flows down to the feet but won't travel back up like it should, which makes the blood pool in the feet causing the poor circulation. I find that my right hand and fingers are starting to fall asleep alot, but am not sure if that has anything to do with the cumadin. Honestly, my toes would be so purple/blue looking , it was scary.

I experience first hand it is the coumadin. Coumadin is poison and I am reporting this to the FDA. It slows the clotting time, that's all. It doesn't clear the clots, magically straighten out any venous insufuciency problems, cure post thrombotic syndrome, does none of that. It poisons the body. It creates havoc in a myriad of body systems and anyone who doesn't experience that is simply lucky. I don't get cold hands so it could be your own DVT effect on your circulation. However coumadin may be somehow interfering with your thyroid gland or other organs, glands that controls your body temperature. It's risks vs benefits. It's supposedly keeps us alive. I would say you have to weigh risks vs benefits. Only you can assess what you feel. See If cold hands/pain etc correlate to either your INR level and/or maybe the time you take the coumadin.

Dkorfhage, thank you for your input. I'm glad to know I'm not the only cold-blooded one. I am wearing socks over the hose to warm my toes, but wearing gloves in the house isn't very practical. :-) My PCP wanted the hematologist to check the Raynaud's, so he should see it first hand tomorrow.

Raynaud's affects circulation to the extremities. When exposed to cold, the blood vessels constrict and interfere with blood flow to the fingers & toes. They turn waxy white then blue. Very weird looking. When the vessels then dilate, the blood quickly flows to the extremities, turning them pink then red and it is painful. I have experienced this for 30 years, diagnosed with Raynaud's 20 years ago. I've only been taking Coumadin for 6 weeks and have noticed this happening at higher temperatures than usual. I'm just wondering if others with a Raynaud's diagnosis experienced this also.

David, I know there are undesirable effects with Coumadin and that you, as well as most of us, have experienced some of them. I personally have hair loss and seem to be colder than usual. Neither are great.

However, as someone who has received mega doses of steroids to recover from life-threatening asthma attacks, I can honestly say, Coumadin, though by no means perfect, is less horrible. It's all relative. I have experienced muscle wasting and was unable to move my head after receiving high IV concentrations, Cushings syndrome, horrible weight gain (100 lbs over a year of treatment! Still trying to reverse that but just as I lose weight, I get sick and have to take more steroids.) mania, severe insomnia (days without sleeping at all), suppressed immune system, and osteoporosis from steroids. The alternative is to allow my bronchial tubes to swell uncontrollably until I die of suffocation. My PCP is hoping I don't end up with a Lupus diagnosis because, guess what's prescribed for flare-ups!

The FDA will not take a treatment off the market, if the benefits out-weigh the risks. They are well-aware that Coumadin slows clotting time but does not dissolve clots nor treat PTS. Those have never been approved uses. It is an anticoagulant, and a very good one (hence its use to poison rats. By the way, chocolate is a poison to dogs but a necessity for me :-)) They are also well-aware of problems with steroids but they are currently excellent therapy for autoimmune disorders and cancer treatment.

I do not take steroids unless there is a good chance I will suffer impairment from an asthma attack and I would not take Coumadin if there wasn't a good chance of serious complications from clotting. I much prefer a thinner ponytail and wearing compression stockings and socks and gloves, to leaving my husband and two beautiful girls because of a preventable clot. So yes, I do believe the benefits far exceed any risks.

I am sorry you are having such a hard time with Coumadin. I hope you are able to find a treatment with which you can comply. I will be checking with my hematologist tomorrow to hopefully get some suggestions for how to cope with my icy fingers and toes.