NEED HELP: Body NOT responding to anti-coagulation?

[deek]

Hi All. I haven't been on here as of late but I could really use your help. Two years ago, I had my mitral valve repaired for severe mitral regurgitation. This July, I had my mitral valve replaced (mechanical) for severe mitral stenosis. The surgery went well, far better than the first, and I am feeling better than I have in years. BUT, and this is a HUGE BUT, I'm NOT responding to the anti-coagulation. I'm currently on 20mg of Coumadin per day and still have an INR of 1.2. I've gone up to 2.0 once or twice since the surgery but most of the time it's stuck between 1.2 and 1.7. I'm taking lovenox injections twice daily but I can't do this for much longer. And obviously, 20mg of Coumadin is A LOT and they don't want to give me more. To my knowledge there is nothing I'm doing to cause this. I'm at a loss and concerned that I won't be able to keep the mechancal valve because of this. Will they have to put in a tissue? Have you ever heard of this? I'm only 37 so this would mean another tissue replacement down the road. Thank you so much for any insight you can offer!

Dee

 

[Protimenow]

Wow. Clearly, you'll probably have to consult with a specialist in anticoagulation.

If you haven't already, it may be worth having another lab test your INR - just in case there's something procedural, or with reagents used by your lab that for some reason aren't giving you an accurate result.

It may also be worth discussing Pradaxa with your physician - I realize that this medication is not approved for anything other than A-Fib, but it may still raise your INR as an off label medication. (I don't know if the developers of Pradaxa are in the process of testing it for mechanical valves, or what problems their testing may have run into, but I wouldn't be surprised if they've looked into adding this indication for use of this expensive drug).

Going to a tissue valve may not be all that terrible -- there are valves that may last as long as 20 years or more -- and by the time your valve starts to fail, there may be minimally invasive fixes for that failing valve. If you can't get the anticoagulation issue resolved -- or if it's going to be a lifelong headache -- it may actually be a GOOD idea to go with a tissue valve. I realize that NONE of us want our chests cracked open again -- but for you, this may be a last time.

 

[AgilityDog]

I have heard of people taking far more than 20 mg of coumadin daily. It's whatever dose keeps you in range. Diet, metabolism, etc. all play a part.

That said, a consult with an anticoagulation specialist (if there is such a thing), and testing at a different facility and on different equipment is not a bad idea.

 

[chaconne]

Dee,

My brother (a Mayo clinic doctor who has a leaky BAV like me), and my cardiologist, both told me that the dose is adjusted to whatever is needed and that this is not a problem. Hopefully you can get this onto the right range and get stable.

 

[Protimenow]

Warfarin seems to work ONLY on coagulation -- there shouldn't be any secondary effects or side-effects if you need to take a really high dose of the stuff. Just be sure to keep on top of your INR testing in case your body should start reacting to it more efficiently than it does now. (You don't want a 2.5 to jump to a 5.0 between tests)

 

[ElectLive]

Dee - This Cleveland Clinic journal article may shed a little light onto your situation: http://www.ccjm.org/content/76/12/724.full

It classifies anyone taking more than 15/day as warfarin resistant. There are several factors that can come into play, among them genetics. I was astonished to read this myself, but it actually says in certain situations that properly monitored patients may be safely dosed up to 100/day:

"If the patient truly has hereditary resistance, there are two approaches to treatment.

The first is to increase the warfarin dose until the prothrombin time and INR are in the therapeutic ranges. When indicated, the warfarin dose can be safely titrated upward to more than 100 mg per day in patients who are monitored regularly—as all patients on chronic warfarin therapy should be—and whose other medications are otherwise stable...

The second approach is to change to another type of anticoagulant. However, there is no strong evidence in favor of this approach over prescribing larger dosages of warfarin."

 

[Bina]

deek, you may want to contact member "Lance" regarding a replacement drug that she takes instead of warfarin.

 

[Julian]

ElectLive this is a great find! Deek if I was in your shoes I would find somewhere else to do ACT management for you just to get a contrast as others stated. Of course taking more warfarin is probably going to be in order to get you in a "safe" range. Good news is you probably have not been properly anti-coagulated for 3 months and you have had no issue with TIA or stroke thank God! What kind of mechanical valve do you have?

Anyway even though it would bother me to take 50mg of warfarin a day, you have to do what you have to do. I truly don't think there is any ill effects to taking that much, its more of a "mental" thing to most people thinking their blood will turn to water. Either way I would get a new recommendation, run this dosage increase idea by them and get to pill popping ASAP

 

[deek]

Thank you for sharing this article. It does shed some light...as well as hope. My cardiologist has referred me to a hemotologist. Again, MANY thanks!

 

[crawal]

Hi Dee
I am taking 15mg of coumadin every day. I did not respond to coumadin initially either.....I didn't hit an INR over 2.1 until after 3 mos post-op. I was usually around 1.2-1.6 for the first 12 weeks post-op. Now I am consistently between 2.5 and 3.0 (I am 5 mos post-op now).
My cardiologist told me initially that my coumadin dose could go as high as 25mg/day if my body needed that. But I am now doing well at 15mg/day.
I hope things level out for you soon....
Amy

 

[deek]

Wow! Thanks, Amy! Good to hear I'm NOT so rare. I will be 3 mos post-op in about a week. So...things could improve for me? I probably should mention that I have a history of not responding as a normal person does to medications. Prior to surgery, I was on 10 plus medications for blood pressure, heart rate and pulmonary hypertension and nothing seemed to work. Occasionally, it's like the medications would kick in and I'd crash...but for the most part I was not responsive. However, since my second surgery my blood pressure has been fine and I'm not on anything for it. Figures still crossed that it stays this way. I have no idea. Anyway, thank you for posting; it gives me hope. We're they concerned by your lack of response initially? They are with me. The max my clinic said I could go up to was/is 20mg. All this information is good to know as the last thing I want to do is have another surgery...but I also don't want to live with the risks of having such low INR's. I'm concerned my body will react to this medicine as it has to others...not absorbing most of the time...then kicking in all of a sudden. I am abnormal, this is certain. Did they give you a reason why you had such a latent response? Just curious. Again, many thanks!

Dee

 

[crawal]

My fear was similar....I was afraid that I would reach a point where the coumadin would kick in and my INR would all of a sudden go sky high...but that never happened. I was testing once or twice a week forever until I finally leveled out between 2.5 and 3.0. Now I test every 2 weeks (because of the high dose I am on, my cardiologist wants me to continue testing every 2 weeks)
My doctor was not concerned....maybe a little frustrated ...but didn't seem overly concerned and remained patient and adjusted my dose accordingly until I found my range.
As to why...I heard many possibilities. I was told maybe due to being younger and very active (I am 40), maybe I have a very healthy active liver, maybe too much Vitamin K in my diet (although I was closely watching this), maybe my body was still in "recovery mode" and "it takes time to adjust to the coumadin"....I was told that it is not uncommon for people to struggle to get in range at the beginning.
Hang in there!
Amy

 

[Protimenow]

If you have your own meter (and, given the high doses you're taking, it's not a bad idea), I don't think it would be unrealistic to check your INR ever week - or perhaps even more often. This way, if there is ever a time when you fear that your high dose may have 'kicked in', you should be able to verify this quickly, before having problems.

An INR below 2 isn't necessarily a prescription for an imminent stroke - although it is best to keep your INR in range. More than 3 months post-op with a bi-leaflet valve reduces the risk of negative events when below range but, of course, it's always best to be at or above the bottom of your range.

The point here -- get a meter if you can. This will save trips to the lab for testing and enable you to do regular, scheduled self-testing and testing if you suspect any anomalies in your INR.

 

[Eva]

Deek,

I went up to 15 mg of Warfarin after my surgery for about 2-3 months before my INR stabilized. I am not on 7.5x4 and 8.5x3.

Though most of the days my INR is within the range, there was a time when my INR was going lower and lower. It took me some analysis of any changes in my diet and it was simply a new kind of Calcium that was recommended to me which had a high dose of Vit. K.

Now I am careful when I buy new vitamins. And I am careful when I binge on spinach and/or green stuffed grape leaves. I take an extra half mg. on those days.

Also, have considered switching from one brand to another. Though Coumadin and Warfarin are manufactured by the same manufacturer, I have a friend whose INR did not react well to Warfarin.

Good luck :smile2:

 

[deek]

Thanks, Protimenow. I DO have my own coagcheck machine and have been testing once a week with it and then sometimes, twice weekly at the lab as I had some question intially about the machines valitity but thus far it seems to be accurate. The question now is, do I want to live like this...fear of living with low INR and it's risks and/or the fear of taking so much coumadin. My clinic changed my script from generic to brand (just to see if this makes a difference) and has me on 20mg plus lovenox shots and heparin. They voiced concern about having me on this high of a dosage and said that I can't stay on the injections for much longer. I've gained some interesting information here - thank you - that I plan to talk to them and my cardiologist about - higher dosages and its effects as well as other forms of anti-coagulation. I also found it refreshing that another member on here had a similar experience for the first 3 mos and is now regulated. Perhaps, I, too, am a latent responder? Anyway, thanks to you all for your input...it's been helpful. D

 

[deek]

Eva, my doctor HAS just switched me from the generic warafin to brand coumadin...been on it for two days now so we'll see if this helps? Thanks a bunch! Interesting too about the calcium vita?

Deek,

I went up to 15 mg of Warfarin after my surgery for about 2-3 months before my INR stabilized. I am not on 7.5x4 and 8.5x3.

Though most of the days my INR is within the range, there was a time when my INR was going lower and lower. It took me some analysis of any changes in my diet and it was simply a new kind of Calcium that was recommended to me which had a high dose of Vit. K.

Now I am careful when I buy new vitamins. And I am careful when I binge on spinach and/or green stuffed grape leaves. I take an extra half mg. on those days.

Also, have considered switching from one brand to another. Though Coumadin and Warfarin are manufactured by the same manufacturer, I have a friend whose INR did not react well to Warfarin.

Good luck :smile2:

 

[Protimenow]

Yes, it's important to watch any new medications that may hide some stuff (like Vitamin K) that can change your INR.

Switching to Coumadin instead of Warfarin will probably NOT have any effect -- the generic stuff is carefully tested (it has to be if the manufacturer wants to sell it and avoid all kinds of negative legal stuff). Constant bridging is NOT a good thing, and may not even be indicated after three months. (I wonder if anyone has ever looked a possible interaction between Lovenox and warfarin in certain people).

Your meter is probably very accurate, so lab confirmations should only be done occasionally -- if even that often. (Of course, if your Coaguchek meter is an S and not an XS, there may be some issues because the meter requires occasional quality control testing -- upgrading to an XS or InRatio (1 or 2) would be a good idea).

Hang in there -- your INR may stabilize, whatever dose you take. Once you've got a consistent dosage and INR in range, your concerns about dropping too low or running too high shouldn't hold you in a straightjacket.

 

[lance]

Good morning Deek
Were I in your situation (not responding to warfarin) I would check into the warfarin manufacturer and try a different brand--you may have already done so.
AND as Bina posted I take Sintrom. This drug is basically coumarin, so I'm still able to use my XS, but without gluten and lactose fillers. Could you possibly be glucose intolerant?

 

[Jason]

I also had a low INR for the first two months after surgery, and had the great experience of shooting myself in the belly with lovenox twice a day. It seemed like it took another 2 months for the bruises from those shots to go away, too! I did eventually get above 2, and the shots stopped. However, I am still not really stable with my INR; it stays in range, but bounces around the range quite a bit from test to test. I am on an every two week schedule, and go from 3.3 to 2.5, and various places in between. It hasn't been a problem as they are within range, but I have been trying to do a better job of eating consistent amounts of greens, etc. to try and stabilize the swings.

 

[Protimenow]

Lance -- this is quite interesting -- Sintrom for gluten allergies (or did you mean glucose intolerance rather than gluten intolerance?).

Jason -- other threads suggest that you should not avoid foods with Vitamin K -- there are health benefits from Vitamin K, and it helps to stabilize your INR. If you like greens, go ahead, but test if you increase your intake. Once you've got a fairly consistent level, management of INR should be even easier.