NEED HELP: Body NOT responding to anti-coagulation?

[lance]

Deek
You might be able to access some very old postings by Al Lodwick, a registered pharmacist who was responsible for INR testing and dose management in a mid-west US hospital. The then manufacturer of brand name Coumadin tried unsuccessfully in court to prove the generic warfarin was not equal to the brand name. This appeared on one of Al's postings and may still be around.
It's still true--eat a well balanced diet including Vit K and dose that diet. We all need a certain amount of Vit. K.
If you're more physically active since your surgery weight loss will reduce your INR levels. Whatever causes a greater volume of blood to be processed by the liver reduces INR.
Hopefully your body will sort things out soon.
Sandra

 

[deek]

Thank you to each and every one of you for your input; it's most helpful as I move forward with this. I am hoping that I'm just a latent responder to the drug as both Amy and Jason mentioned they were. I will be 3 mos post-MVR on the 5th, so things should start leveling out for me IF they are going to. Thus far, they have not. I'm currently on 20mg of coumadin daily and taking Lovenox injections twice daily. When they increase my coumadin my INR increases a little bit (from 1.0 to 1.7) but then falls back to the low 1's again. I test again tomorrow so we'll see? I guess my question now is 'how long should I let this go on?' At what point do I have to stop briding with lovenox and what are my risks of having an invent should it come to this?

Many thanks, Dee

 

[kfay]

Dee, I'm so sorry you have run into this problem after having to have a re-op so soon. There was a study done by Vanderbilt regarding genes and responding to warfarin (http://news.vanderbilt.edu/2008/03/...act-response-to-blood-thinner-warfarin-56780/), I don't know if some of the info in this study might shed some light on what's going on to you or if having the genetic testing done would help make a decision about what you might ultimately need to do. I know we had another member on here, I think her name was Sarah Louise, who was actually a teenager who had a lot of problem maintaining her warfarin levels and spent a large amt. of time on Louvenox shots. Have you consulted with a hemotologist? I might try that if I were you if you haven't already.

As far as how long you let this go on, I think that just depends on how long you feel comfortable giving yourself shots. I don't know if you are more at risk from an event on Louvenox vs. Warfarin, that would be something to ask your Dr's. As far as risk from a 3rd surgery, my Dr. told me it would be a 10% risk. I don't know if that holds true for all 3rd surgeries or just for me. Again, that might be something you explore with your Drs. when or if you reach the decision that that is the path you want to go down.

Kim

 

[Protimenow]

Deek:

I'm not sure about actual risks of throwing a clot with an INR below 2 for an extended period. We have a member, Dick (I forget his full log-on name), who forgot to take his coumadin when he was on a vacation and had a stroke -- but Dick had his valve replaced in 1967 - yes, 1967 - and presumably, the valve you got a few months ago would have been much safer when it comes to clot formation on the valve.

The risk should be considerably lower with your valve than it was with a valve made more than 40 years ago -- but you aren't without risk. Guidelines I've seen recently do NOT say that you shouldn't maintain an INR at 2.0 or above -- but don't talk about imminent risk of stroke if you fall close to 1. (Personally, I recently had an INR of 1.1 -- I am still not sure why. It WAS of major concern to me, and I followed the Duke guidelines and increased my dose, but there didn't seem to be a clinically sound reason for me to bridge. Would I have liked to have my INR return to normal range quickly? Sure. Did I bridge? Nope.)

In your case, there IS a mathematical risk of throwing a clot with an INR as low as your body wants to keep it. In your case, your body seems to figure out what warfarin is doing and works around it. (FWIW -- rodents have developed resistance to the effects of Warfarin -- perhaps there's a mammalian gene that some of us have that can identify and negate the effects of warfarin). Seeing a hematologist or another physician who specializes in anticoagulation may be a good choice. In fact, if you have a university nearby, I wouldn't be surprised if they'd be very interested in what's going on with your body, and may be able to help.

 

[Bina]

Thank you to each and every one of you for your input; it's most helpful as I move forward with this. I am hoping that I'm just a latent responder to the drug as both Amy and Jason mentioned they were. I will be 3 mos post-MVR on the 5th, so things should start leveling out for me IF they are going to. Thus far, they have not. I'm currently on 20mg of coumadin daily and taking Lovenox injections twice daily. When they increase my coumadin my INR increases a little bit (from 1.0 to 1.7) but then falls back to the low 1's again. I test again tomorrow so we'll see? I guess my question now is 'how long should I let this go on?' At what point do I have to stop briding with lovenox and what are my risks of having an invent should it come to this?

Many thanks, Dee

It is sad to hear that your troubles continue, but good to hear that your doctors are keeping you safe with
the Lovenox injections. Do NOT stop the shots without your INR being in a safe range, life is too precious.
Best wishes.

 

[Protimenow]

There are many articles about warfarin resistance -- here's one: http://www.ccjm.org/content/76/12/724.full. I'm sure that your problem is NOT non-compliance with dosing -- this article mentions people taking doses up to 100 mg/day.

If you google the words 'warfarin resistance', you'll find many articles listed.

Again - if you can find researchers at a school near you, you may be able to get the benefit of their research.

 

[Lynlw]

It is sad to hear that your troubles continue, but good to hear that your doctors are keeping you safe with
the Lovenox injections. Do NOT stop the shots without your INR being in a safe range, life is too precious.
Best wishes.

I agree with Bina (Once again especially since you have mitral valve the risks are a little higher than an Aortic valve. Hopefully they will find a way to help you, soon I can imagine how sore your stomach area must be by now.
When is your appt with the hemologist?

 

[deek]

Thank you ALL for your thoughts, insight and advice.

 

[Lynlw]

Thank you ALL for your thoughts, insight and advice. Just wanted to update you...I'm now on 30mg of coumadin daily...my INR went up to 2.1 for a day and has gone back down to low 1's...and an echo shows a small thombus at the valve sight...they are going to infuse this but may very well have to replace the mechanical valve with a tissue. Met with surgeon's PA yesterday to discuss...they are not optimistic I'm going to respond to the anti-coagulation given my past history with medications...saw a hemotologist and they couldn't find any obvious cause for the resistance other than malabsorbtion and/or genetic predisposition...so, I don't know??? What would you do at this point? Take the risk and wait it out or just replace and be worry free for 10 years or so? This is so unreal.

I'm sorry to hear this and especially hear they found a small clot on the valve. Did they admit you to take care of the clot?

 

[Protimenow]

Deek:

Thanks for the update. I'm sure many of us were concerned about your situation.

Recently, I wrote something about the tissue valves only lasting 7-10 years -- and BOY was I corrected. If you get a tissue valve, you may wind up with a trouble-free valve for perhaps 20 years. Further, if that valve starts to fail, by the time it does begin failing, there may be well perfected, minimally invasive methods to repair the valve.

If it was me, and I already showed a clot on my mechanical valve, I'd have them yank that sucker out and replace it with a tissue valve as soon as practical. I don't think I'd even think twice. It looks to me as if it's more risky with that mechanical valve and the demonstrated potential for developing a clot on it than it is to replace it with a tissue valve and (probably) avoid the complications of warfarin insensitivity.

 

[kfay]

Dee, you are really in a tough spot, aren't you? What are they planning on doing about the clot since you are already taking Louvenox? If I were in your shoes, I'd have to give serious thought about replacing with a tissue as soon as possible. Unfortunately, I think it could just be a matter of time before you have serious issues with a clot.

Have you thought about calling CC or Mayo and getting an opinion from them? I'm so sorry this is happening to you.

Kim