I'm on Coumadin (8mg 5 days a week and 6mg the remaining two) for a DVT in my right leg. I've noticed that my hands and feet can get really cold, especially my feet. When they turn cold, they can get a purplish color (not the black and blue color like when I got my blood clot in the right leg), but when they warm up the purple color goes away. Has anyone else had this happen? I'm just curious if Coumadin can do this. Also whenever I hang my legs over the bedside, they turn purplish...I'm assuming that it's because my blood is thin and the circulation is compromised because of having my legs just dangle over the bed.
I've had my INR checked every month and everything is on schedule, and just had it done Friday (haven't heard back on the results yet). I am just wondering if others experience this sort of thing on Coumadin. Thanks everyone.
it's so funny you asked about this because even though i've only been on it a couple of weeks, my hands are CONSTANTLY cold! my feet are some of the time too but i really notice it with my hands. they feel like they're 20 degrees lower than the rest of my body!
my right foot (which was the foot i broke and the right calf has the dvt) is always turning purple and is still really swollen. actually they have been saying it is hard to even get a pulse in it but it is constantly turning colors and the top of it will be hot but the bottom will be ice cold. it's so bizarre.
hmlyn04 - So good to see you! How did your road trip over the weekend go? I was hoping that everything went well and that your leg didn't swell up or get too painful!
My leg still turns purplish/red a LOT, especially if I'm in the hot shower or have walked a lot without my compression stocking. When I first was discharged from my 6 day hospital stay, I had to have the ambulance come back and take me back to the ER because I was in agony, and the ambulance techs. couldn't find a pulse in my foot either. When I was in the ER though, they found it. Are you going to regular appointments to get it checked?
Whew, I'm glad I'm not the only one who gets cold hands/feet. For me, it's mostly my feet that are like ice blocks! I'm so not looking forward to the winter months, because they'll REALLY freeze (at least I'm in NC and not Vermont or something lol)
yes, our trip was great. i honestly can't tell you how much my entire family needed it and even for just a few days, it made me feel so much better!!
yes, they did find a pulse in the ER but only by using an ultrasound because there was so much swelling. i agree that mine also gets really red, especially after a nice hot shower. i know that my foot will never be the same again and it just seems weird. my mother had her first dvt almost 10 years ago and her foot still gets swollen for no reason sometimes.
as for me, i found out last night that my INR was 2.0 so they told me to stay on 10mg and not go again until next week. the nurse said that was good news but who knows!
back to the cold - my hands are frozen right now as we speak!! i guess winter is going to be really fun this year! ugh!!!!
I'm so glad that your trip was such a fantastic time. You definitely deserve it, especially after what you've been through! I know when I took my trip from NC to Upstate NY I felt like a free woman! I wasn't able ot leave the house for months, and 9 months after my DVT I was able to go on that trip and I felt like a new woman!
The ER found my pulse in the foot using an ultrasound machine on me, too. My doctor told me too, that the swelling and the redness/purple color will probably always be there to varying degrees. Like right now, I'm a LOT better but my thigh measures 6 inches bigger around than my leg without the blood clot. I've come to terms with the fact that I will probably look very different the rest of my life, but I don't care. I'm just happy to be alive!
Having your INR at 2.0 is great! My doctor said between 2 and 3 is what they like to see, and the last time I got my INR tested it was 2.43, the best it's ever been! I had it done again last Friday but I haven't gotten my results back yet (my doctor is so behind and I keep calling with no avail). Right now I get mine checked every 4-6 weeks. Before, I was getting it done every few days. When in the hospital for the 6 days, I had it checked every single morning. Plus too, I was on Lovenox shots which makes a difference. Were you ever put on Lovenox shots for your clot?
Okay I ramble, so I'll let you go ) I just got out of a nice warm shower and now my feet and fingers are cold...again! Brrrr lol
i think you are right - it is great that you are here and alive! i have to admit that some days i get upset but then i think about what could have happened even with my dvt and my three children and i pick myself up pretty quick!
i was never put on lovenox and i was never even hospitalized. this is where i hear from a lot of people that it sounds weird. i went to the vascular doctor, they did an u/s and put me on coumadin and sent me on my way. i am hoping that this is a good doctor, however, the orthopedic doctor who sent me to him is not a good doctor at all. i am trying to research as much as i can but i feel like it is overwhelming some days!
today i might call the doctor because i am having a lot of hip pain and pain where the clot is. actually, while i had my cast on i was having all the pain of the clot but when the cast came off, i really didn't have any pain. now all of sudden last night and today i am getting a lot of pain there again. i figure that is what he is paid for, to answer questions!!
sorry - rambling again! keep those hands/feet warm!!
My apologise for not writing sooner. I've been feeling a bit off the past week, so I haven't been online much. I do hope you're doing well, though!
I got my blood test results back today for my INR, and my level was 2.16, a bit thicker than it was my last test (2.43). So now my doctor wants me to go back to taking 8mg of Coumadin every day instead of 5 days a week, and then 6mg the two remaining days. I'm kind of bummed, just because I've been doing so good and then once again get knocked down. But it could be a lot worse so I guess I shouldn't complain
How are you doing with your hip? Were you able to get in to see the doctor about your pain? I sure do hope everything is okay!
Stay warm and take care
Last edited by waterfairy; 10-17-2007 at 04:02 PM.
Just a suggestion...
My father was on Coumadin for a while and it caused numerous problems. Please go to your pharmacist and ask for the insert that comes with it (that normally only they have unless you ask). In the insert, look at the side effects and warnings and look through (it's quite information intense, so it will take some reading) the area where it warns about "purple toe syndrome." You'll find several warnings about what you may be interested in there. I'm hoping it's not the same thing, but please don't hesitate to get forceful with the dr if you think there may be something to those warnings and your symptoms. If you want more info on what my dad went through, I'm happy to talk with you about it. However, I don't want to worry anyone needlessly and hopefully you have a much more alert dr than what my dad had. Good luck!
KR... could you please tell me about the coumadin/warfarin? if need be, maybe a new thread. I've had such trouble keeping mine stable. It's gone from 1 to 4.8. There's a list of questions they ask me every time I go in for my INR ck but I've forgotten them at the moment.
I take it because of a heart valve replacement. Thanks
Coumadin can be a great thing, it's needed in many cases, but there are so many side effects, SERIOUS side effects, that you need to monitor your own situation with it very closely.
My dad ended up having both legs and one hand amputated because of the stuff, then suffered for 10 years with various health issues before he passed away. He was originally taking it for blood clots in his legs from a surgery for colon cancer.
It started off with cold feet, legs and hands after about 3 weeks of taking it. Dr said it was just a small side effect, nothing to be concerned about. A short time later, probably a week, maybe (?), he started noticing that at times, his foot would get a purple tint to it. DR said it was from the blood clots, but funny thing was, the blood clots were already mostly disolved at that point. But, he stayed on it, thought the dr would know what he was talking about.
Soon, he noticed that his big toe was purple, not the "normal" purple, but dark purple. Dr said it was fine, that his blood count was in the safe zone, but it kept getting worse. Turns out that not only can the Coumadin cause skin ulcers, but it can also cause what's called "purple toe syndrome" which can actually be any part of the body, and also internal ulcers. He took himself off the coumadin, but it was too late, gangrene had set in. They amputated his foot, then just kept going further up until they had taken all of the left leg, then took the right leg, then 2 years later, his hand.
Meanwhile, the next dr told him that it should have been caught much sooner as the cold legs and feet were the first symptoms of something wrong. That dr told him that the internal ulcers are a lot like bedsores only worse, that they start internally and work their way to the outside which causes internal infections in many cases.
You need to remember that you have the final say in your healthcare. If one dr doesn't seem to be making you comfortable with the care you're receiving, find another that does. Second opinions never hurt, and most insurance companies will cover the costs of a second or even a third opinion. There's a reason why they do, what one dr doesn't catch, another might.
After 10 years of suffering caused by Coumadin, my father finally passed away. (I say finally because of the suffering he endured for way too long) From what we saw in his later care, there were a lot of others going through the same thing from it as well. One lady had a mastectomy due to the ulcers in her breasts. The Veterans hospital had numerous people suffering from it as well. Later on, it had changed his blood to the extent of affecting his heart and he ended up with congestive heart failure.
Like I said before, the stuff is great from what I know of it, when used properly and proper blood monitoring is done. One slip up though can cause so many side effects, it's crazy. I certainly hope your issue is not from the same thing, and if it is, hopefully it is being caught soon enough not to cause the issues my father went through. However, with Coumadin, you can never be too safe or too cautious. If you have a question about a symptom, get it checked! And always insist on blood counts being done!
Also, were you told not to take antiacids like Tagamet, Pepcid, Zantac? They can sometimes cause the side effects to be worse. My dad was prescribed Tagamet by the original dr while he was on the Coumadin, guess the dr didn't know or didn't take the warnings seriously. You really need to get the insert that comes with it from the pharmacist, or even go online and search it because it has a lot of the drug interactions in it and online, you'll also find the foods that interact negatively with it too. If I remember right, I think spinach is one of those foods.
hey waterfairy, i'm so sorry to hear you haven't been feeling well. are you doing better now? it must be so frustrating to have the coumadin changing like that, just when you think you are doing well. just from watching my mother all these years, it seems like one big roller coaster.
kr, i'm so sorry that your father went through so much but you are absolutely right that you have to speak up for yourself and especially with your health.
i've had a bad week too and actually ended up in the ER once again. i have been having horrible chest pain and shortness of breath. they did a work up on me and found nothing so they had me follow up with a pulmonologist. they did show that my INR went to 3.76 so on tuesday it was 1.1 and sunday it was 3.76! this is just driving me crazy!!! so right now i'm on 10mg/day but i had my blood drawn this morning so we'll see what happens.
i had talked to my doctor about my pain and he thinks it just may be anxiety from everything that has happened in the last 12 weeks and trying to care for my kids, etc. all i know is that i used to be a person who could go all day and the other night i was in bed at 5:30!! i've turned 90 overnight!!! LOL so now i am just trying to breathe and get through the day without any major drama! of course i get enough drama from my kids
kr045 - I'm so very sorry about your father. What a terrible situation he was in! Thank you for sharing your story and getting the word out. It's definitely opened my eyes on what to look for. *HUGS*
hmlyn04 - I'm SO sorry that it's taken me forever to write. I've been having Internet problems and some health stuff too. I'm so sorry to hear that you landed in the ER! Are you able to find any reasons why the chest pains came about? Were you able to follow up with your doctor and get some answers? I sure hope it's just the anxiety of everything going on! I sure know about the frustration of having all of this happen. I ended up in the ER twice, once by ambulance, after my 6 day hospital stay. It's scary and VERY frustrating.
My spent all day on my feet on Saturday, and Sunday my leg had swollen up like a balloon, even moreso than it normally was. I was wearing my compression stocking and that didn't even stop the swelling. My ankle wasn't even there anymore, and I had hundreds of broken blood vessels around my ankle because my leg had swollen up so much. So my doctor put me on a diuretic water pill for a few days to get the fluid build up to go away. I'll tell you what...I've lost 4 pounds in 1 day from all of that fluid!
I sure do hope you're doing a bit better hun! Take good care, and hope to hear from you soon. *HUGS*
hey waterfairy! i'm sorry you had such problems and now you're on a diuretic too! it seems like these clots are just a launching pad for craziness in our bodies!!! what is up with the broken blood vessels? is that something that has happened to you before? you poor thing!
well i am so confused about this whole coumadin thing! on last sunday my INR was 3.76 in the hospital and then on friday it was down to 1.5 so they have me alternating 15mg/10mg every other day but not going for another test until next week which is two weeks away! it is just so bizarre. she said it was low and last time she said it was low, they had me get tested only 4 days later.
i have an appointment on friday for another u/s and to see the doctor. i have so many questions! do you still feel like that? by the way, on the coumadin, do you get light headed all the time? i feel like i am always light headed lately and it is so freaky sometimes.
well let the coumadin games continue! thanks for listening and i hope you are feeling okay. talk to you soon! : )
Hiya hmlyn04 How are you doing today? I hope you're well. I'm doing pretty good, though I'm still awful swollen. Not as bad as it was, but since taking that diuretic pill it has helped. My leg doesn't look like a tree trunk anymore, but it's still massive. I have a feeling it always will be bigger because of the damage to my vein from the blood clot. Sheesh, right? But the hard part about the water pill is that it makes me extremely dizzy and lightheaded. Always something, right? lol
Well, the broken blood vessels is from the swelling, and because the skin around the ankle is so thin it really showed. When I first had the blood clot and came home, I had hundreds and hundreds of purple dots and broken blood vessels all over my leg because it had swollen so much. And being on Lovenox shots, that really increased the bruising so it looked like I'd been hit with a bee-bee gun all over my leg.
Ah, the Coumadin saga lol It is a massively confusing drug, isn't it? I'm going almost 11 months here being on the stuff and I'm *still* confused about it a lot of the time. Getting regulated on it is very difficult at first. It took about 6 months before my levels evened out, not to discourage you. I go once a month to get my levels tested.
Have your doctors told you what all to watch out for while taking Coumadin; the whole Vitamin K thing? I'm sure they have, but if not let me know and I'll share what I have found about trying to avoid foods and things with V.K. in them...it helped me a great deal.
Honestly, when I first started taking Coumadin I was very lightheaded, but I can't say if it's from that or from all of the Morphine, Darvocet, Percoect, Oxycontin I was on for the pain. I have a feeling it was from all of the narcotic pain medications, but it could be Coumadin. It really can effect everyone differently. I would talk to your doctor if you're concerned about it, even the pharmacist...they deal with Rx's all the time and what side effects come with them.
I wish you the best with your doctor's appointment on Friday. Hopefully you'll get the answers you need and want. I've actually made appointments with my doctor just FOR questions about the blood clot and medications, etc. The questions are neverending...it's all part of the game we call DVT lol