One more thing- I keep getting Charlie horses in my left foot and calf. For weeks now. Is this a sign of clotting?

I was getting a lot of cramps in my leg because of my extensive DVT. I started taking Potassium Gluconate every day and the cramping stopped. You leg just has poor circulation, that is always going to cause problems. Are you wearing compression socks? You should ask your doctor about those. They will help with the swelling in your leg. I have not tried Xarelto so I can't speak to that. Also, the symptoms you're describing in your leg are most likely Post Thrombotic Syndrome. Who told you your clots were too old to get stenting? Have you tried to contact Dr. Mark Garcia at Christina Care in New Jersey? He has removed chronic clots in patients that were over ten years old. I hope you feel better soon. Hugs!

It sounds like you could have PTS, but that's really a diagnosis that your doctor should help with. The May-Thurner Syndrome, also, is something that a doctor should look at and possibly diagnose. I think there are stenting procedures that could help with that. You would need to talk to someone very familiar with MTS and possible fixes on this.

I'm not sure what insurance you have, but maybe you should apply to get a home testing machine for your INR. I'm also a warfarin lifer, and I have had one for the last 3+ years and it is quite effective and usually within .2 or so of a venous draw. Plus, it is very, VERY nice to not have to deal with the lab anymore.

I will say that I had my first DVT ten years ago next month and my right leg is still one inch around larger than my left leg--from hip to ankle. I don't expect that to get better, but I don't have really any other issues with the leg in terms of swelling, pain, discoloration.

I agree with @jeremy1999 about the potassium and the compression stockings. I've had good luck with both.

I think the biggest danger with the alcohol is really if you get falling down drunk and hit your head on something. I know there are a fair number of people on warfarin who have regular drinks and are fine and their doctor is OK with it. Depends on amount, of course, and how consistent you are with it. You might run some searches and see if you turn up any old threads on drinking on warfarin...

I do not understand why stenting cannot be carried out. Did they try to rule out May-Thurner? To reliably rule out may Thurner you need venogram and/or intravoenous ultrasound. The thing is if it is May-Thurner is causing your repeated clottting, then widening up the Iliac vein with stenting will really improve circulation and should reduce your PTS symptoms. If your PTS is caused by residual clots reducing flow, then like Jeremy mentiones, Dr. Mark Garcia should be able to remove these. This operation is actually not that invasive. If your PTS is caused mainly due to floppy valves, then unfortunately not much can be done, but the success of operations where artificial valves has been overall poor. Some pople have used Venovawe to reduce PTS symptoms.

With respect to alcohol, then it is fine to drink alcohol while on warfarin, as long you avoid being drunk . Like TossNTurn mentiones, the risk is that you can fall and cause bleeding increase while drunk. Falling on your head is particularly dangerous as it can cause intracranial bleeding that can be very difficult to deal with (actually often fatal) while on anticoagulation. If you suffer head injury where you suspect internal bleeding while on warfarin, go straight to ER, ask them to check out for bleeding (can be done with blood tests) and in case of bleeding, your will be administered K-Vitamin to reverse the bleeding. Alcohol thins the blood and raises the INR. I have not seen informaiton about how much alcohol is needed to actually raise significantly the INR, but that should depends on various factors such as body weight, alcohol dehydrogenase activity and many more factors. However, in heatlhy person then the risk of bleeding does not increase that much until at INR above 4, and the target levels are between 2-3. So as long you avoid becoming drunk, then drinking alcohol is fine....

You can be on xarelto as well. It has no antidote as warfarin (which is a huge disadvantage in case of internal bleeding) but has much shorter half-life, and thus quicker to leave the body. The advantage of it is that it only affects a small part of the part of the clotting cycle, whereas warfarin affects the whole K-Vitamin cycle. K-vitamin, apart of being important in clotting processes, is also important in bone mineralisation. Long-term usage of warfarin (e.g. 30 years or more) can increase arteroslerosis (hardening of arteries) and osteopororosis (bone thinning). Here we are really talking about a long-term usage of this warfarin, and these effects may mostly or only been seen among elderly poeple. While xarelto is so new the long-term effects are now known, but again, it only affects a small part of the clotting cycle which should be a really good sign with regard to side effects. Also, with xarelto, all this hassle of INR measurements is not needed....

Hey, Eshaw,

The side effects of Coumadin combined with alcohol are probably minimal-- Toss and Stefan covered the significant risks well, and I drank heavily for years while taking Warfarin, but...

Why not just stop? I mean, sure, it's wildly addictive and all that, and the first three to six months are hell for some people-- I noticed you're a member of the Alcoholism group, so I figure you're "one of us," so to speak.

I don't know how it would be for you, but holy crap, my life really improved after I stopped spending every weekend with my loser, middle-aged drunk and stoner friends, and started hanging out with all these bright, healthy people in AA. I didn't give up on my friends who drink and use, I just don't see them after 6:00 in the evening! The people in AA are FUNNY, too, man, the meetings can really be a riot. I checked out your journal entries, and they seem pretty dark. (You should see some of mine from last year-- they're not posted here-- holy crap. I only got 11 months.)

The thing is, after five years or so on Coumadin and using alcohol and smoking weed... I kinda felt like I was losing my edge, you know? At work, with sports, playing music live or in the studio, I just wasn't at the top of my game. And I'm pretty damn old... I don't know how much longer I can ski or surf or play clubs or whatever. I want to get as much out of it as I can for as long as I can.

Also, if I'm going to do some high risk sports on Coumadin, I don't need the distraction of wondering if I'm too hungover. If I screw up, I want it to be just because I screwed up, not because I drank or used the night before.

Oh, yeah-- great advice, Jeremy, on Potassium. And the charlie horse's do go away, though it might take a year or two.

Hang in there,

--Cat

HI I'm on xarelto. I am happy I dont have to do the blood testing bc I know I would struggle with that as well. Can they switch you? I have no major issues but it's only been 3 months. Just found out part of my leg is chronic dvt as well. Not sure what that means. My lower leg is a bit better though, although the whole leg hurts and pinches. I wish I could tell you more about the xarelto, but my lung PE's have resolved I think, I was just in the hospital. So, I guess it is working?? I drink a little too. I was told only one glass of wine, but when I have to $ to buy wine, I can't only drink one glass. And I've read that its ok to a degree I just try not to overdo it. I think a few glasses should be ok, but I dont know. I looked up other ppl on xarelto and they have not been told to stop drinking completely but it depends on the doc I guess. My leg hurts more too after walking. I dont do much else, but I did a 30 min walk last week and I was pretty uncomfortable afterwards. When do you find out about the may thurner syndrome? I know someone with it and she has to wear the hose forever. Do you have a good doc that you trust? You could always go for another opinion... feel better!!