Machka 

My Dr took me off Warfarin in May without sending me for an ultrasound to check on the status of the last remaining clot. I thought that was a bit odd, but he seemed to think my clots should be gone and I should be fine.

Three weeks later I was back in his office with a swollen leg and a mess of broke capillaries. I was rushed into an ultrasound, and sure enough, I've got a clot in the left leg. We're not sure if it is the same clot as before still lurking there, or if it is a new one. My INR level had also dropped below normal again. So I'm back on Warfarin and we're working to get me stabilised again ... my INR level is determined now to be quite low, despite the ever-increasing dosages of Warfarin.

I am using compression stockings about 3 days a week. I like them, especially when my leg aches. They seem to make my leg feel better.

And on Monday I go to see a specialist in Melbourne. I have no idea what to expect from that. But I've been experiencing dizziness, shortness of breath on exertion (walking briskly), a complete lack of energy, and numb feet especially when walking ... so it will be interesting to find out what he has to say.

chasm54

Sorry to hear that. You must be seriously fed-up of all this by now.

Machka 

Yep! I've been struggling with this for about 14 months now. I really miss my energy!!

Bionicycle

Machka… Sorry to hear your having all these problems, but it sounds like you will likely be on Cumadin/Warfarin the rest of your life from what you have described.

I’ve had blood clots in my left leg at least twice now that have broken up and went to my lungs to become pulmonary emboli. I have a clotting issue that showed up with my blood and will likely be on Warfarin the rest of my life. I have to keep my I.N.R. between 2-3.

You have mentioned several times in your posts on this thread that you feel tired a lot. Have your doctors ever checked your lungs to make sure you are not having Pulmonary Emboli? One of the symptoms of P.E. is a feeling of fatigue, and general lack of energy. At it’s worst you get shortness of breath, and you feel like you could just lay down and sleep about anywhere, due to your bodies inability to absorb oxygen. The treatment for the P.E. is pretty much the same as the D.V.T., Lovenox injections, and Cumadin/Warfarin therapy. I’ve just never ever heard someone say that Warifarin was making them tired.

B.T.W…. I’m sure someone has told you this already, but Warfarin is an “Anti-coagulant” it doesn’t actually thin your blood, or act on the clots directly. It just keeps you blood from clotting as quickly as it normally would. Your body is what will dissolve and re-absorb the clots. Our bodies are doing this all the time, we just don’t know about it until a clot gets big enough to cause a problem. As far as making you feel the cold more… that is kind of a “wives tail”. All Warfarin does is block 1 protein in your blood that aids in clotting, and it doesn’t completely block it otherwise our blood wouldn’t clot at all on the stuff. As said before, it doesn’t thin your blood in any way shape of form.

Well, best of luck to you. Machka. All and all Warfarin is not the worse drug to have to take the rest of your life, if it comes to that. I would rather take it then some of the Beta Blockers for high blood pressure any day. Talk about sap your energy, now those will do it.

Just a quick P.S..... I've been on Warfarin for about five years now with no known ill effects.

Machka 

Yes, I've known that right from the beginning ... it was in the literature they gave me in the hospital.

I have also talked to numerous other people who are on Warfarin (there seems to be a lot of them out there!). Some don't seem to have any side effects like fatigue and difficulties with temperature regulation, but a lot do. However, I must say I have not experienced the hair loss side effect!!
https://www.nlm.nih.gov/medlineplus/d...l#side-effects

According to this article, https://www.mja.com.au/public/issues/...us/gallus.html ... "The daily maintenance dose of warfarin differs greatly between individuals, commonly between 0.5 mg/day and 15 mg/day ... The average maintenance dose is about 4.5 mg/day.". I am on 11 mg, and at last check I'm only at an INR of 1.5, aiming for somewhere in between 2 and 3 ... so maybe the higher dose makes a difference.

Bionicycle

That could be... I'm on maintenance dosage of 3mg five days a week, and 4mg two days a week. My I.N.R bounces between 2.3 to 2.8 monthly depending on diet, stress levels, and so many other unknown factors. But, I've been really lucky(?) that it is very stable and I only have to get it checked once a month (knock on wood). Maybe once you reach your target I.N.R they can back your dosage down for maintenance. It took about six months of dedicated vigilance for mine to settle in and stabilize. My results may be different then most though, because mine seems to be a blood issue; my blood was clotting to fast. I really haven't noticed any major difference in my bleeding time if I cut myself on accident; which is a good thing considering my doctor told me to stay away from sharp, and pointy objects, and my other favorite hobby/pastime is Archery.

P.S. you are right... it's seems everyone and their brother is on Warfarin/Cumadin once you start talking about the stuff. I just get tired of people saying when they find out you're on it. "Oh, I didn't know you have heart trouble"

Machka 

It took about 6 months before I finally stablised between 2 and 3, and when I did I was on 10/10/11. That was back in January. I remained on that dosage until May when my Dr decided I was OK and took me off. 3 weeks later when it was discovered I wasn't OK after all, he tried me back on the 10/10/11 but that didn't seem to do the trick, and then raised it to 10/11/10/11 ... which didn't do it either. Now I'm on straight 11s. If it isn't up to 2 next time I'm in, I'll be put up to 12. When I was in the hospital last year, they had me all the way up to 15 for a while.

Unfortunately I have a genetic mutation which causes me to develop clots ... and combined with a high homocysteine level increases my risk of developing cardiac disease. I already have two damaged valves in my heart and an irregular heart beat, so I don't need anything else causing heart difficulties.

So ... not only am I on 11 mg of Warfarin, I'm also on daily multi-vit and folic acid tablets which are supposed to lower my homocysteine levels.

About the bleeding time, as long as I am within the 2-3 range, I notice a little bit of difference, but I suspect my blood is doing what a person with normal clotting would do. It takes a little bit longer to clot than what I consider normal, but nothing to be worried about. When I get up over the 3 range, then I notice a difference. When my INR was bouncing all over the place, I could tell when it went high because all of a sudden I'd get nose bleeds ... I'd get tested, and sure enough, it would be high.

Machka 

I am off the Warfarin!!

I am homozygous for the MTHFR C677T gene mutation, and also have a high homocysteine level. There is evidence that this combination increases my risk of atherosclerosis (hardening of the arteries) and blood clots.

At the moment the treatment is to lower the homocysteine level by taking mega doses of folic acid and Vit B. They are not sure if lowering the homocysteine level actually does decrease the risk of atherosclerosis and blood clots, but they figure it is worth a shot.
https://circ.ahajournals.org/cgi/cont...ll/111/19/e289

So ... off the Warfarin, and onto mega doses of folic acid. The specialist also thinks that exercise can help me. Hopefully I'll see an increase in my energy level so I can do more!

MTBLover

Just a heads up- if you've had a DVT, you are at increased risk of chronic venous insufficiency, which in turn puts you at increased risk of DVT (as well as stasis ulcers, which are next to impossible to cure when they go beyond a certain point. I have CVI, but more likely from a congenital bone deformity (tarsal coalition) that makes my calf pump less effective than in those without the condition. But having come close to a stasis ulcer, I can tell you I won't go anywhere without my 30-40mm graduated compression hose (even on the unaffected leg). And that decreases my risk of a DVT. If had had a DVT, I wouldn't think twice about wearing these things all the time during my waking hours.

BTW, as unfashionable as these things are, they certainly make cycling a bit less tiresome- great support for the calves on those centuries!

Good to hear of your success Machka!