I'll get a rise out of this post!

[Gail in Ca]

My INR was 1.9 yesterday and I'm not changing my dosage until I see what it is next week.
Since I'm trying to keep it in the 2-2.5 range, my doc said it was okay to go down to 1.8. I am totally okay with this, as I have the new valve sewn inside a new graft, and it just requires a lower INR.
I only take 45 mg of warfarin a week now instead of the 70mg/wk I took when I had my 1st mechanical.
And, I have to say my body reacts the same when I cut myself. A cut or puncture gets bigger, bleeds a bit more than if I wasn't on warfarin, just like it did when I had my range of 2.5-3.5 and kept it more at 3 and up. For me, 2 is the new 3!!

 

[Ross]

Umm what kind of rise were you hoping for? the window is too tight, but then you know that.

 

[ARGreenMN]

I assumed she meant by showing her pic - and of course it worked - even on beta blockers

 

[mainframe]

Gail, there was a lengthy discussion a couple of months ago when another one or Miller's patients asked about his recommended INR level of 1.5 to 2.5 for those of use with a valve and graft. Michael from Dr. Miller's office contributed to the discussion which was predominately against. Me, I just follow the Anticoagulant Management (from my HMO) group’s advice which is 2.5 to 3.5 though Dr. Miller and Michael have called my doctors more than once with their recommendations. Oh well.

 

[Gail in Ca]

Any kind of rise is good, right? Well, I was thinking ( a dangerous pastime, I know) with my subarachnoid hemorrhaged but healed, brain, that not all people are the same where dosage is concerned. I bled before my INR reached 10, others go there and beyond without an event. So, maybe my body doesn't need that much warfarin to be clot-free. It was just a random thought I had one day after reading someone's post on high INR's and what they do about them. Okay, I won't think again for awhile. My blond highlights will help me with that!!

 

[ARGreenMN]

Tried to get more insight about my low/tight INR range (1.8-2.2) today. Not sure how successful I was, but I'll pass on what I understood (but see disclaimer below). There were some questions I wanted to ask, but forgot (i.e. is it "legal" to recommend a lower range than the one in the guidelines DTread posted the other day). And I know this will be controversial, but where better to post something controversial than in a thread titled "I know this will get a rise".

DISCLAIMER, DISCLAIMER, DISCLAIMER - I'm just one guy, getting an opinion from one surgeon (actually met with his assistant rather than him today). Your mileage may vary, and listen to your surgeon/cardiologist/doctor, not me or my doctors.

My surgeon (Robert W. Emery, from St. Paul, MN) has apparently been one of the leaders in the studies on lower INRs. His assistant told me they're actively trying to educate the phsyicians that the traditional 2.5-3.5 isn't necessary, at least with the newer generation valves (at least in the Aorta position). And that higher INRs can have risks too (internal bleeding is the risk w/ high INRs, stroke is the risk with low INRs). She talked about the newer valves having lower "gradients", which apparently allows for lower INRs to be safe. I expressed concern that the 1.8 end makes me a little nervous, so she said, then shoot for 2-2.5. But she assured me again that 1.8 is safe for my valve... I also asked about people saying it's near impossible to stay within a .5 range, and she said it's harder for some than others, but many can do it, so they have you try - then if you have trouble, they adjust. So far, over my 4 1/2 wks since surgery, I've been one of the lucky ones - between 2.1 and 2.7, even with introduction and now weening off of Amiodarone. Today I was 2.4. I did talk to her about Slimfast (and Ensure) which has 25% of your RDA of vit. K. She said one a day is probably ok, but more than that might start causing issues, unless you consistently do the same amount (in which case they'd just adjust your Coumadin). Not sure if this helps anyone, and certainly hope it doesn't hurt or mis-lead anyone, but I guess I'll just stick with what I was already shooting for (2 - 2.5) and see how it goes for a while...

 

[Ross]

So it's actually being studied with no real solid evidence that it's safe?

I think it probably is, but I'm just uncomfortable with it. Why on earth are they worrying about bleeding in a normal range anyhow? I swaer these doctors are so scared of a little blood, but aren't the least bit scared allowing you to stroke.

 

[ALCapshaw2]

Andy,

You may want to ask your Doctors about the Accuracy and Tolerance of an INR Test Reading.
Also ask about the variation between different types of tests / test instruments (fingerstick Brand A, Brand B, Brand C, etc. and Veinous Draw). And the variation between subsequent tests by the same method.

If they tell you that all of those variables are less than 0.5 I would have serious doubts about their experience / knowledge of the issue.

FWIW, I have seen a difference of 1.0 between a fingerstick test using a Coaguchek XS and the subsequent Lab Draw,
both tests performed at a Good AntiCoagulation Clinic.

'AL C'

 

[Ross]

Andy,

You may want to ask your Doctors about the Accuracy and Tolerance of an INR Test Reading.
Also ask about the variation between different types of tests / test instruments (fingerstick Brand A, Brand B, Brand C, etc. and Veinous Draw). And the variation between subsequent tests by the same method.

If they tell you that all of those variables are less than 0.5 I would have serious doubts about their experience / knowledge of the issue.

FWIW, I have seen a difference of 1.0 between a fingerstick test using a Coaguchek XS and the subsequent Lab Draw,
both tests performed at a Good AntiCoagulation Clinic.

'AL C'

Precisely what I've been trying to get across. Different reagents have different ISI values and will give different INR results. That's why I say that a test can be off as much as the narrow range they have him in.

 

[Lynlw]

Tried to get more insight about my low/tight INR range (1.8-2.2) today. Not sure how successful I was, but I'll pass on what I understood (but see disclaimer below). There were some questions I wanted to ask, but forgot (i.e. is it "legal" to recommend a lower range than the one in the guidelines DTread posted the other day). And I know this will be controversial, but where better to post something controversial than in a thread titled "I know this will get a rise".

DISCLAIMER, DISCLAIMER, DISCLAIMER - I'm just one guy, getting an opinion from one surgeon (actually met with his assistant rather than him today). Your mileage may vary, and listen to your surgeon/cardiologist/doctor, not me or my doctors.

My surgeon (Robert W. Emery, from St. Paul, MN) has apparently been one of the leaders in the studies on lower INRs. His assistant told me they're actively trying to educate the phsyicians that the traditional 2.5-3.5 isn't necessary, at least with the newer generation valves (at least in the Aorta position). And that higher INRs can have risks too (internal bleeding is the risk w/ high INRs, stroke is the risk with low INRs). She talked about the newer valves having lower "gradients", which apparently allows for lower INRs to be safe. I expressed concern that the 1.8 end makes me a little nervous, so she said, then shoot for 2-2.5. But she assured me again that 1.8 is safe for my valve... I also asked about people saying it's near impossible to stay within a .5 range, and she said it's harder for some than others, but many can do it, so they have you try - then if you have trouble, they adjust. So far, over my 4 1/2 wks since surgery, I've been one of the lucky ones - between 2.1 and 2.7, even with introduction and now weening off of Amiodarone. Today I was 2.4. I did talk to her about Slimfast (and Ensure) which has 25% of your RDA of vit. K. She said one a day is probably ok, but more than that might start causing issues, unless you consistently do the same amount (in which case they'd just adjust your Coumadin). Not sure if this helps anyone, and certainly hope it doesn't hurt or mis-lead anyone, but I guess I'll just stick with what I was already shooting for (2 - 2.5) and see how it goes for a while...

Andy, ( Disclaimer alot of this is just my own personal experiences and thoughts )
I know (well pretty sure) there aren't any clinical trials to see if the lower INR in the Regent is as safe as the guidelines, but I know just from being Justin's Mom and having to make medical choices based on "theory" (that his doctors made clear we knew it was just theory). Because there aren't many people older than Justin who had the same things or when he was a baby, complex congential heart surgeries still were fairly new and improvents were being made all the time (we even were part of a study that sedating babies/toddlers BEFORE they went into the OR was safer/better) and since he was in the first group there were no papers or proof, which we knew what the normal procedure would be and what they HOPED the newer way would improve and the benefits to Justin and kids coming after him. (ALSO we had to sign all kinds of papers saying we knew there were no studies/proof, it was experimental)
But usually when it got to the point the leaders in the field were trying to teach other doctors/Medical personal/patients, that something was better and safer, they usually had studies you could read showing their results. Do you know if the studies your surgeon has been working on are available to read at pubmed or elsewhere?

Like Ross, I will never understand why many doctors fear bleeding over clot/stroking. I know you can have internal bleeding or bleeding strokes but most strokes are from clotting, ,but for the most part I PERSONALLY fear a bad stroke or clot going some where, for either me or a family member over bleeding and kind of think IF you have to take coumadin anyway, have the testing ect, I feel better (for my dad at least) to have him at the higher end of the range than lower.
FWIW I KNOW there IS a Clinical Trial, comparing ON-X vs a SJM valve to test the "hypothesizes that rate of thromboembolic complications of the On-X prosthesis is reduced as compared to the SJM prosthesis" BUT I don't know what SJM valve they are comparing the ON-X against. It IS being sponsorred by ON-X and the official title is "Thromboembolic Related Complications in a Randomized Trial of Previous and Current Generation Mechanical Valve Prostheses" So it makes me think, they are comparing it to an older generation. The reason I'm bringing it up, is I don't believe your hospital is part of the trial, but since it has been going on a few years, MAYBE the results so far are going well for the SJM?
I also remember that BEFORE the ON-X South African study with poorly anticoagulated patients, there was a study by some of the same doctors comparing 3 different mechanical valves (I don't think SJM was one of them, but could be wrong), but that study showed for the Aortic postions at least, there was no real difference, so could see where it MAY be as safe, but if the company (SJM) felt the Regent was safe at the lower level, I don't know why they wouldn't spend the money to run a trial like ON-X is.

 

[ARGreenMN]

I totally get what you guys are saying (and agree with it). And have the same concerns - which is why I keep trying to understand what really is safe. I'll keep asking questions 'till the cows come home, and the one about accuracy of different testing equipment is a great one that I forgot to ask yesterday. I do remember from my engineering days something called a "safety factor" which designers are required to design into critical products. An example I remember is for bridges. If I remember right, the recommended safety factor for bridges is 2.0. So, if the calculations show a critical I-beam needs to be 12 inches thick, you're supposed to actually design it at 24 inches, twice as thick, just to be safe. I guess I've been assuming the same kind of safety factor is built into the design of these INR monitors. But would be good to know what the realities are (i.e. if one shows a 1.8 reading, what is the lowest you could likely REALLY be). I suspect it might be +/- somewhere around 0.3 which I assume is why my doc is recommending 1.8 as lowest range (rather than the 1.5 I've seen some others recommend).

So far I've been tested at the hospital (2.2 & 2.1), at my normal clinic (ranging from 2.2 - 2.7) and at an urgent care facility on a Saturday (2.5). And I'm going to keep shooting for 2.0 - 2.5, at least until I have a lot more experience with this - if not forever. I'm also applying for a home testing unit so it'll be interesting to see how close it's readings are to those at the clinic.

Haha, which reminds me, you're talking to a guy who bought the most accurate scale I could find (supposedly accurate down to .1 lb) because I've always been so frustrated with varying readings when trying to lose weight. And for the first few weeks I had it, I'd calibrate it with the very expensive one at the gym about once a week. I'd weigh myself on one, 3-5 times and take the average, then immediately go measure myself on the other one 3-5 times. As 'accurate' as my home scale is it still can vary by 2-5 lbs from one reading to another. At the extreme, sometimes I'll get 248.4, then get off and right back on and get 250.8, then get back on and get a 256.9 or something like that. But most of the time, it'll be more like 248.4, 249.1, 248.2. I've found if I take the average of 3-5 readings (again, something they taught us in engineering, because all measuring devices have variability) it's always pretty darn close to what the gym says. And the gym scale has a lot less variability (rarely more than .1 lb from one reading to the next).

 

[Ross]

If only INR were that precise. It's not. Rarely can you do two tests back to back and get the same result. It's not impossible, but rare. The other thing, comparing your machine to a lab draw: Your comparing apples to oranges. They use a different reagent with an ISI # of usually 2.?something. Finger stick machines have an ISI # of 1. Most times, the lab will give a lower number then the machine. This is what bugs me because INR was established to correct the variations between reagents and ISI's and I've found that it's not true.

 

[ARGreenMN]

Great points Lyn, and yes, I've looked up as many studies as I could find (the ones my doc has lead or is leading, as well as the On-X study). They're all pretty technical and hard for me to understand... I also had a talk with him prior to surgery about On-X vs. Regent. He said he's very aware of the On-X and it's study. He basically told me the two valves are similar (not identical, but similar) in that they both have lower gradients than the older valves. I saw a chart once recently (I think on the On-X website, but can't find it now) that seemed to confirm what he was saying. If I recall corretly, the On-X gradient was upper single-digits, and the Regent was just slightly higher (also upper single digits, or maybe right around 10.0 or slightly above). Vs. the more traditional valves (i.e. St. Jude Master Series) which were significantly higher 15+.

By the way, that discussion I had with him was not just about lower INRs, but about the possibility of not having to be on Coumadin at all someday with the On-X. I believe that is one of the legs of that study). He seemed pretty optimistic that not only would that likely pan out with the On-X but also with the regent 3-5 yrs from now. He seemed to be hinting he's privvy to the 'early results' which are very promising, and may likely apply to Regent too someday, even though the current study is officially only on the On-X.... But again - disclaimer, disclaimer, disclaimer - noone should ever count on that 'till it becomes reality.

I guess the bottom line for me right now is, jut just like when I put my heart in his hands a few wks ago when he did the surgery, I feel fairly comfortable about putting my stroke risk in his hands now too. Although I admit, just like I was a smidge nervous before surgery, I'm also a smidge nervous about possibility of stroke. And like you said, erring on the high-end is is more comfortable for me too (he said 1.8-2.2 is safe, but I'm shooting more for 2.0 - 2.5).