INR Instability

[djacq]

This morning I tested a 5.4 INR and immediately went to the forums to get support. I know I don't post often but I cannot express how important VRC has been to get through difficult times. I almost went to the ER until info on this site grounded me.

It has been a rough ride trying to take medications. I cannot tolerate asthma, cholesterol medications, antihistamines and starting to think I have an intolerance to warfarin. My INR levels go from one extream to the other within a day. My liver function tests are normal and I have had a ton of scans and lab work. Two recent Lovenox bridges were difficult also.

One thought is that the generic Coumadin is not carrying a consistent active ingredient.

The other thought is upsetting to me as I am not sure of the long term ramifications being on Coumadin but I am in the process of a blood dysfuntion work up (Porphoryia). I am seeing a Hematologist this week since some of the markers for porphoryria tested positive.

I hope everyone is enjoying the Fourth of July week end. I sure will as I don't feel I have to run to the busy ER today thanks to the info on VRC.

 

[Ross]

For 5.4, I'd skip one dose and maybe skip another half on the next day.

Question is, how are you being tested, what dose are you on and any other medications. Basically, give us a full work up of information.

 

[Bina]

Without knowing your history, it is impossible to suggest whether you should take 1/2 dose or skip an entire dose.
I also would try taking the name brand Coumadin for a while and stop the generic warfarin.

 

[bvdr]

This morning I tested a 5.4 INR and immediately went to the forums to get support. I know I don't post often but I cannot express how important VRC has been to get through difficult times. I almost went to the ER until info on this site grounded me.

It has been a rough ride trying to take medications. I cannot tolerate asthma, cholesterol medications, antihistamines and starting to think I have an intolerance to warfarin. My INR levels go from one extream to the other within a day. My liver function tests are normal and I have had a ton of scans and lab work. Two recent Lovenox bridges were difficult also.

One thought is that the generic Coumadin is not carrying a consistent active ingredient.

The other thought is upsetting to me as I am not sure of the long term ramifications being on Coumadin but I am in the process of a blood dysfuntion work up (Porphoryia). I am seeing a Hematologist this week since some of the markers for porphoryria tested positive.

I hope everyone is enjoying the Fourth of July week end. I sure will as I don't feel I have to run to the busy ER today thanks to the info on VRC.

Some situations do make maintaining a stable INR very difficult. It doesn't take much to shift mine drastically one way or the other. I allow myself (as do my docs) a wider range which helps. Even though 5.4 seems really high it is not that far from being OK. Your plan seems perfectly reasonable. Remember the high INR won't cause you to bleed but will make the bleeding last longer if you start bleeding from some other cause.

Let us know how your hematology visit goes. It will be interesting to hear his take on things. Knowing what you are dealing with may make the situation easier rather than harder. Let's home anyway!

 

[djacq]

Thank you for the supportive info.

I have been stable on warfarin 52.5 mgm a week since my AVR 2002. I test using Pro Time with a lab back up every few months with little deviation.

The past year I can't stay stable on any amount. I have been on 87.5 mgm a week for a few months! My INR is still all over the place with huge, quick drops.

Brand name Coumadin has been on my agenda with reluctance as I am having a problem believing BARR would not be meeting the standards of Coumadin.

Thank you for the help.

Gosh Ross can't you put up that very cute picture of you and AL???? Your Avatar does not reflect your true cuteness!

 

[Ross]

It may be something with your blood. Are you eating any hidden sources of vitamin K? Somethings changed, whether it be what your eating or something inside your body, but somethings changed.

 

[njean]

Oh boy, I too can relate to the frustration you are having w/your INR instability.

I normally was testing once a week but for the last month or so, I decided to test every other week or every 2-wks. Well, for the first 2 wks, my INR was staying between 3.5 & 3.7, still within a reasonable range because my cardio actually wants me between 3.5 - 4.0 due to my double-valve implants. Well, I tested last Sunday & it was 5.0! That freaked me out because I couldn't figure out what I had been doing that would have caused that. But, I started going back to what I had been eating & I had suddenly acquired a fancy for "Activa Low-fat Yogurt". That was the only thing I had added to my diet that was different. So I stopped eating it.

So Sunday night, after testing at 5.0, I skipped my dose that night, then took 1/2 dose the following night & then resumed my usual dose of 10mg/daily. I checked my INR yesterday & it was 2.6, a little low but I just took my usual dose & I'll check it again at the end of this coming week.

So, think very hard of what you may or are eating that may be different. But whatever you do, don't get all stressed out about it; it happens to just about everyone that has been or is on anticoagulatants.

And, if it makes any difference, I have always taken the brand name (coumadin) & never warfarin so I'm not really sure that that would be the real issue.

Good luck & I'm sure that eventually you'll get on track again.

 

[Karlynn]

I would email Al Lodwick about your questions in conjuction with the blood issues. He will know if specific blood problems can cause an unstable INR.

Given the amount you are on, I would skip just one dose and resume normal dosing and test again in 4 days. I know people will say that generic should not affect your INR and Al Lodwick has told us that there should be no difference. But I had problems with a generic making my INR go too high. As someone else mentioned, ruling out a generic cause is easy enough by trying the brand name.

Best wishes!

 

[Guest]

Djacq
I think that you explained all of your problems when you wrote the word "porphyria". There is a statement in the medical field that says, "If you can find one diagnosis that covers all of the symptoms then you probably have the correct diagnosis". Porphyria is one of those things that covers lots of answers. It affects the liver and the liver is responsible for metabolizing lots of medications -- particularly warfarin. My guess is that this diagnosis will be made soon.

Since only about 10% of the people in the US and Canada now cling to the brand Coumadin, there would be a nationwide epidemic of wildly fluctuating INRs if one of the generic manufacturers made an inferior product.

So think about your possible diagnosis of porphyria. Is it more likely that you have a bad batch of warfarin, and have a rare condition that doesn't allow you to tolerate asthma medications, and another condition that doesn't allow you to tolerate cholesterol medications, and another condition that doesn'tallow you to tolerate antihistamines or have one condition (porphyria) that would explain everything?

 

[ALCapshaw2]

Whenever my Coumadin Clinic (which uses a lab grade finger stick machine with internal memory and bar code reader) gets an INR >4.5 (they used to use >5.0), they automatically call for a Lab Draw to verify the result.

A second test with your machine and another test strip, ideally from another batch, would certainly be justified.

I like the "half dose" approach. It probably helps, and won't get you into too much trouble even if there is an error, in either direction.

 

[Guest]

When they do a venous draw and the values are different, how do they determine which one is correct?

 

[Robbyn]

My INR also has a history of being all over the place. I started 4 years ago on 6 mgs and I now take 18 mgs a day. Sometime it is 1.4 or like last week it was 5.6. I always blame myself of doing things wrong.

But I spoke with clinic and she told me that 80 -90 % of people will have a fairly stabile INR and then there are 10 % who never will. There is where I fall and I not going to worry about it any more.

Good luck to you.

 

[djacq]

As an update to my wild ride on blood thinners recently, I went from a 5.4 yesterday to a 3.3 today. I held yesterdays dose and enjoyed some broccoli but doubt that could account for the dramatic drop in one day.

I am getting nervous and worried about maintaining my valve if I cannot keep adequate levels of my INR. As recently, I have also dropped to a 0.8 rapidly and I have been keeping my phramacy financially sound with my use of Lovenox!

It will be interesting what the Hematologist tells me this week. I know it is too soon to worry about the future but I am concerned if it is possible I cannot take warfarin. Do people live on Lovenox? I think I had a reaction to that also. Had a sever case of restless legs taking my last series of Lovenox.

 

[Ross]

I can understand your worry, but until you've been to the hemo man, I don't see what choices you have.