This stable INR business is really p...ing me off

[Ryanvs]

Hello all. During the first few months of warfarin usuage did any struggle to keep it stable? Since pretty much ceasing daily pain medication (panodol) around 5/6 weeks ago my inr has dropped from 2.8 to 2.5 to 2.2 then last wel 1.9 and this week 1.7. When it was 1.9 we increased the dose from 5 a day to 5 days of 5mg plus 2 days of 6. So needless to say i was surprised to see it drop after an increase in warfarin. My diet hasn't changed either. I've upped my disage and get rechecked in 3 days. That said, could the drop be attributed to not consuming panadol and it takes a few weeks to correct itself? Did anyone else experience this? Is 1.7 dangerous. My ideal range is 2-2.5.

 

[Ryanvs]

Oh. Panodol is paracetamol

 

[dick0236]

............ Is 1.7 dangerous. My ideal range is 2-2.5.

I doubt that a 1.7 is "dangerous" for one of the newer valves. Your INR is probably dropping as your activity increases. Nobody can keep INR "rock solid"........just try to keep close to your range +/- a couple .1s. I like the way your INR monitor is slowly adjusting your dosage.....that will reduce any "yo-yo" swings. It takes a little patience in the beginning.......that's why self-testing is the better way to go.

 

[scott.eitman]

I found this statement with a search on "Paracetamol INR": "In patients receiving paracetamol, the mean observed INR was significantly increased after 4 days" Therefore, I would think it would stand to reason it would go down if not taking it."

 

[Ryanvs]

I'll be looking into buying my own kit to check my INR eventually, however I just need to save up a few dollars first. I'm not sure how much they are in other places but in Australia the device itself is around $550, then on top of that you buy the strips etc. A pack of 24 strips cost around $140. That said, considering I'm only 31, self testing in the future is the way to go as having to leave work early/start late to be checked every few weeks will get annoying. Also if i wish to travel etc. It will be a wise investment.

I just never realised how frustrating this process is, especially having increased the dose only to see a drop in INR. I assume the paracetamol i was taking had a larger effect then I realised.

 

[pellicle]

Hi

I just observed that you're in Australia .. if you want to chinwag about this please PM me and we can exchange phone numbers. I'm on an Amaysim unlimited so I can chat as you wish.

Hello all. During the first few months of warfarin usuage did any struggle to keep it stable?

define "stable" ... my definition of stable is not out of range ... so I'm >90% stable ... if you think that the line will look straight ... well when you're flatline in all areas (aka dead).

Since pretty much ceasing daily pain medication (panodol) around 5/6 weeks ago my inr has dropped from 2.8 to 2.5 to 2.2 then last wel 1.9 and this week 1.7.

that's pretty normal - the interaction is well documented and also my observation for myself.

However what's important here is that testing picked up the shift WELL BEFORE any harm could come from this. This is exactly why I strongly advocate you self test and self test weekly ... because its impossible to know and memorise all these interactions (even for a professional) so unles you're an IT based Expert System (IE a bit of software yourself ) then self testing is the best most reliable way to stay inside the lines ;-)

I guess that the hardest thing for newbies to get used to is that you don't suddently burst out bleeding with an INR over 3 nor suddenly become a giant clot with INR > 2 ... but it will come with time, experience and knowledge.

So needless to say i was surprised to see it drop after an increase in warfarin.

welcome to the wonderful world of evidence and reality not ******** and myth spinning of idiots who aren't actually ON WARFARIN nor actually have the due dilligence to know the facts (when sitting across the office sounding important is more the business that matters to them).

I've been banging on about exactly this for years here ... citing evidence from my own 'self testing' and "self experimentation" (often accidental, but as the Newcastle Song Lycrics suggest - to never let a chance go by )


The machines are actually cheapest in the world here in Australia right now, because they don't seem to have caught up with the USDollar changes ... so buy one right now before they go up when local stock runs out. PM me about that if your budget is super tight.

Strips online are (as you suggest later) about $150 including shipping for 24 strips Which when you think about it is less money per test than gets getting to the testing center and wasting time waiting for a blood draw (not to mention times in the week where you can spend time wasting time).



I recommend strongly that you watch my video on my blog post and bookmark my blog post for reference. Its well known that students get about 10% out of a lecture and even though my video is only 45 seconds long there is a LOT in there. Nothing is mistake (except my not properlly setting the lance) and every aspect is significant.
I said to Agian recently about this and to do a dry run a few times before ... but he blew a few strips anyway.

Reminds me ... I should call tomorrow and see how he went, he'll be under the knife today.

Blog posts:

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html
and
http://cjeastwd.blogspot.com/2014/05...ocks-dose.html

When you start self management (because you'll come to realise the stories about the clinics are not an exaggeration) you may want a spreadsheet, let me know and I'll share a google sheet with you and help you to get started.

 

[Ryanvs]

Honestly, I was secretly hoping that you would reply, Pellicle. I've read your posts in the past and I really like your input! I may take you up on your offer one day and PM if I have any issues.

I guess in hindsight I was quite stable (up until recently) ranging from 2.1-2.8 (ideal range for my CardiaMed valve is 2-2.5 however my surgeon said 2-3 is also fine). I think the reason I thought I was 'unstable' was due to the Dr's that would review each INR stating that eventually it gets to a consistent level, so I was assuming that eventually it would end up as a straight line. I guess in the real world this isn't really possible.

Yeah I'll definitely buy my own kit. I ran some rough numbers this morning and the cost of me missing work is more then the cost of the machine and strips. Also, I can't put a price on the peace of mind that comes with doing my own testing.

I'll certainly read your blogs and watch your video at home too (I'm at work so out IT block youtube).

 

[pellicle]

Hi

just in case its helpful I keep spreadsheets of every INR test I've done (including any "lab reference" checks I do about every 6 ~ 12 months).
Here is my data from
2014

and 2015

There is one fellow here who clams that his INR is always the same ... he's tested monthly and I was not under the impression that he kept records and he has never provided any data to back that up (so who knows if its just his memory or what).


Also, I'm bound for Finland in October, so after that it'll have to be skype or email ...

...Also, I can't put a price on the peace of mind that comes with doing my own testing.

Amen to that Brother!

Knowledge is confidence. Like the old saying goes

 

[Ryanvs]

That is incredible! I never imagined it would move around like that! Also very reassuring. Thank you for sharing! I'll definitely hit you up for a copy of the spreadsheet when I start home testing.

 

[pellicle]

Hi

That is incredible! I never imagined it would move around like that! Also very reassuring.

glad to help

its also worth noting that the 'wiggle' looks "bigger" because I've chosen a scale of 1.5 ~ 5.0 ... so that sort of magnifies things compared to if I'd chosen 0 ~ 10

I chose as I did because:
* anything less than 1 is not really possible
* anything more than 5 is very unlikely (as I'd be on it before then)

 

[Ryanvs]

Yeah, that makes perfect sense.

thanks again!

 

[DachsieMom]

Mine took at least 6 months -1 year to somewhat stabilize. I would be down to 1.6 at times. Now I am usually 2.0 to 2.5 range on my Coagucheck. My range is 2.3-2.8 (although my surgeon wanted 1.8-2.2, but my cardio feels differently). Some of the lack of stability I think was attributable to the increase in activity for cardiac rehab. I was running quite a bit. I couldn't figure it out. They would even raise my dose and sometimes my Inr would decrease! I home test and although it costs me a fortune even with insurance, it's worth it. I did not have time to go to the lab every week, and my arms looked horrendous. Pellicle was an amazing resource - and his video in the coaguchek really helped. I wasted quite a few strips before I watched it - and I even had a home health nurse helping me. I have a st Jude aortic valve.

 

[Ryanvs]

Ah ok, that's another thing I hadn't considered either! My activity levels have increased since most/all restrictions have been lifted. I'm back playing golf, playing more with my kids, doing more 'chores' that require lifting 'heavier' items.

Yeah, Pellicle has been a great source of information and I'm looking forward to viewing his blog/videos tonight.

 

[pellicle]

Ok ... now I'm a little embarrased with all this praise ... but thankyou both for the kind words.

Ryanvs I should have looked deeper and noted your operation dates. I think its common that as we move past recovery into 'normal' our metabolisms alter and our need for warfarin increases.

I noted this back in 2012 (2011 surgery) as I was starting to need more warfarin ... I went from 4mg up to 6 and then eventually 7.25mg that I'm averaging now ... back then noone was saying anything to me about anything (and I was with QML here in Queensland) and I just wondered if I was somehow building up a tolerance to warfarin.

I know better now ;-)

 

[Ryanvs]

Ah, ok. that would make perfect sense too. I feel a lot more relaxed now than what I did at the Dr's yesterday evening. Phew!

 

[Protimenow]

I have a St. Jude valve - and it will be marking it's 25th year in my chest next month. I don't know what the safe INR levels are for newer models, but I'm most comfortable if I stay in the 2.5 - 3.5 range (or, at the very lowest, above 2.0). 'New' meters can be quite expensive. Here in the United States, I've bought meters at anywhere from 0 dollars (a person selling a meter sent it to me, so that I can self-test) to a few hundred dollars. Some of these meters are hospital surplus - after a few years of use, they're still usable, but are sold off because they've been 'capitalized' and their costs can't be taken off their taxes any more. Some may have been used, possibly only occasionally, by a relative who died from non-anticoagulation related issues - the heirs just don't need the meter any more. Others may be from doctors who are closing their practices. There are probably dozens of reasons why 'used' or barely used meters are available.

Mine came to me through eBay. Keep watching, and you may find one that can either be bought in Australia (there IS an Australian eBay isn't there?), or bought in the United States and shipped to you.

Beware the CoaguChek S - some ignorant or unscrupulous vendors may try to sell one of these - they've been discontinued and no strips are available for them. Personally, I'd avoid anything but the CoaguChek XS (which probably has the best source of supplies) or the Coag-Sense (which may not have much support in Australia - I don't know).

I'm not sure about the safe ranges for the newer valves - but I haven't had many problems with an INR between 2.0 and 3.5 or so. Keeping it above 2.0 - even with the new, less clot-forming, valves - is probably not going to impact your life very much.

 

[Ryanvs]

Wow! 25 years. Thats terrific!

Yeah i read online to avoid the CoaguChek S as it had been recalled a few years ago or something like that.

Yeah we have Ebay. I'll check it out but I may opt for a new one, only cause i would presume it would last longer. I guess it depends if i can not only find a second hand unit, but also the price.

My safe range according to my surgeon is 2-3 but ideal is 2-2.5.

 

[Warrick]

Ditto on the creds to Pellicle, thumbs up.

From my experience I found in the first 4-5 months or so I'd be stable on one dose for up to a month and then my INR would drop and I'd have to increase the dose, I started on 5 mg and its slowly work up to 9-10mg depending on the week now, for me I test on a Friday and I've noticed lately my diet (if I have veges more than 3 time a week) has a notable effect.

My safe range according to my surgeon is 2-3 but ideal is 2-2.5.[/QUOTE]

Same as me, I've been down to INR 1.6 and up to 7.7. Haven't had a clot thankfully and my pee never changed colour

 

[Warrick]

The more I read your INR results the more I think it looks almost exactly like mine was, so hang in there and I know it's hard but don't stress it, keep a record yourself and hopefully you can look back in a few months time and wonder what the worry was

 

[Agian]

Hi Ryan, I live in Adelaide.

As you might have already read, I'm day 1 post op.