INR Difficulties

[Debbweb01]

Hi My INR was only 1.6 this week! It's been 4 months and doesn't seem to come up? Does that mean my blood is very thick or is there another reason! My doc sez boy r you hard to regulate! Why am I so difficult??? Thx for any input! Also my local Hemo says the parameters have changed as far as what level of warfarin I shud be at! He said they use to think so! But now they changed it! Has anyone heard that???

[Debbweb01]

OMG I meant 1.6 so sorry ! It's only once went to 3.7! Wen I you can't get coagulated fast does that mean ur blood is very thick? So sorry lol... I'm stupid sometimes

[Debbweb01]

My doc says 2.5 and I disagree! He says they changed the level, but I have not heard that yet in this site! I've only heard APS PATIENTS shud be between 3&4? Is that correct! Y are some people more difficult than others! I don't like this at all! I lost my left leg last Jan 7,2015 and had issues with my right leg with tiny embolis at 2.1 INR! Does that mean my blood is very thick! I'm up to 15 mg a day of warfarin!

[Amabella in reply to Debbweb01]

I've been on Coumadin since I was 16, my dr wrote me a continuous script for blood draws. My father had an INR machine but he has read that studies show it is not compatible for APLS and can lead to false readings. We wonder if that's what happened when my appendix burst. My INR was a 5.6? And rising. It took my years to nail down the right dose. I take 12mg daily. I'm 29. I also take a ton of other meds idk if that has anything to do w it.

[Ray46 in reply to Debbweb01]

2011 BSH guidelines here: bcshguidelines.com/document...

They do indeed say 2.5, however, as far as I can see (I am not a doctor etc.):

Firstly it is _solely_ a guideline for prophylaxis against further clots. For _treating_ other APS symptoms there is nothing specified - not sure if that applies to you.

Secondly, if you have clotted (at least for VTE) whilst in range 2-3 (which you say you have), your range should be increased to 3-4 - that is right there in the guidelines section 1.1, right before the APS bit.

Now, you can print a copy of those guidelines to go through with you doc, either a respectful non-confrontational approach or have a copy hardback bound and beat him over the head with it - your call

[jetjetjet]

Amabella the home finger test machines are not be used if you are LA positive . every one is different -- I am APS positive and LA is one of them my range is 2.5 to 3.5 , i test at lab. every 3 days but never any longer than one week . -- i can be a 2.4 on Tues. and then 9.1 on Fri. - i have been this way with my INR'S since Dia. 10/1/2009. I also on many meds's .

[Ray46 in reply to jetjetjet]

When I test at the clinics, they use a Coagucheck finger prick machine that looks exactly the same as the home ones (not exactly sure as no self-testing in my area). Does anyone know if there is a difference between the hospital machines and the home ones?

Note: I am LA +ve, I have also had venous/lab tests done and they were only 0.1 different to the finger prick machine, so I am not bothered, just wondering where this "do not use" is coming from when the clinics appear to use exactly the same piece of kit?

[jetjetjet in reply to Ray46]

I don't go to a clinic because they use machines . i do blood labs

[tim47 in reply to Ray46]

The only difference between the 'pro' and 'home' version of the Coaguchek is size of the machine and degree of use as far as I am aware, The method is still the same. Whilst some Lupus Anticoagulant positive people cannot get on with the machines, others, like Kerstin and myself can. I self-test every other day and cross check with a venous lab test every new pack of strips.

Although the effect of an anticoagulant is easier to understand as a degree of the 'thickness' of blood, this isn't how it works in practice.

My venous lab tests are also usually very close to the self test and in the 0.1 range.

The amount of warfarin individuals may take to acheive their target INT is also a very individual factor.

There are many reasons people take anti-coagulants and doctors are most familiar with the recommendations guiding such 'general' use. We are special though- and if we have had one or more events as well as a diagnosis, many of us require coagulation at a higher rate that many doctos have traditionally been used to. For non Hughes patients, many don't like to see an INR above 3.0. Having Hughes and having had multiple TIAs at 3.3 I feel comfortable aroud the 4.0 mark (target 3.8 - 4.0)

[Lure2 in reply to Ray46]

I am LA positive. The difference between the test in the vein at the lab and the Roche-machine- value is 0,8 - 1.0, a serious big difference. You have to do several of the two tests for a long period of time to be certain that its will show the same difference between the two. It can be a slight difference of 0,1 - 0,3 but according to my Hematologist at the hospital and Roche that is quite ok.

Kerstin

[Lure2 in reply to Lure2]

I want to say that the difference 0,8 - 1,0 may be unique for me.

Also the Machine-INR in the finger is higher than the vein-test at the lab. That could perhaps also be individual. i do not know that only know what they have told me. The important thing is to find out if you have a constant difference between the two values (took me a year) and with no more fluctuation than 0,1 - 0,3 (sometimes 0.4)

Also very important, that according to my Hematologist, it is the vein-test value at the lab that shows the correct INR. So every day when I test my INR here at home on may machine, I have to reduce the value with 0.8. If it is a very high reading the difference may be 1.0.

Hope I helped somone out there.

Kerstin in Stockholm

[jetjetjet in reply to jetjetjet]

Sorry Amabella in re-reading my reply above , it should read { i am an APS triple positive an one of them is LA positive} that should make more sense to you now { SORRY } . I am also primary . Kerstin that is on here is the only other i have run into that is the same as I . She uses the finger home test machine and has luck with it .She is very knowledgeable on our problems and at one point was an administrator. a very nice lady from Sweden , have you had the opportunity to talk to her on the machine ??

[Hidden]

I recommend that you speak with your APS specialist.

Several years ago my GP had trouble regulating my INR. Subsequently, a hematologist switched me to Lovenox; I have been on it since.

[Debbweb01]

Yes on them too can't seem to get regulated! Thank you for ur responses!

[CheddarAddict]

Diet, hydration, work stress, exercise, illness... Beer...

ALL of the above would affect my INR one way or other when on Warfarin.

It is critically important to remain as consistent with ALL things as possible if you INR is fluctuating

Good luck

[rlupus]

your not alone mine goes up and down all the time mine needs to be 4.5/5 but it never gets there very offten. always haveing to mess around with changing dose.

[london-lass]

My consultant said we Hughies will always fluctuate, and we need to change our dose as little as possible because the body needs to stabilise.

Blessings Ann

[Danni33]

I'm currently taking 30mg of Warfarin ( I have two strokes caused by APS). My INR was only 1.3 today my range is between 3.5. & 4. I have not reached this range since I started Warfarin in June 2015, and have been on Tinzaparin injection every day since then.

My haematologist and rheumatologist have told me that high doses are very common in APS and some people can get into range at lower doses and some need higher doses. I was seen at Guys, 3 weeks ago and they reinforced this.

Danni

[Fra22-57]

I am secondary APS as have other auto immune diseases.my range is 2.5-3.5 at moment is 2.4 and take between 6/7 mg warfarin daily

Being on warfarin now does it effect crp+ esr results which are indicators of inflammation. I still in agony n problems with my RA +gFibromyalgia yet since been on warfarin these markers have come down thou my pain n swelling of joints still there.

[Lure2]

Hi Deb,

I think you told us the other day that dr Erkan said that you should change from Warfarin to something else - not remember - was it Plaquenil ? Hold on to that Dr!

Kerstin

[Lure2]

Yes, the amount of Warfarin is individual and is not so important. The INR is important and to stay in the therapeutic range.

We have "sticky" blood like cream when not anticoagulated. We usually need over 3.0 (I know you know that!) but others learn also. to avoid miniclots etc etc.

Kerstin

[Lure2]

Yes, I take 5 mg of Warfarin but now I have an "influenza" with fever so my INR is very low and I have had to take several days with Fragminshots to compensate as the INR was under an INR of 3.0 for several days.

What works for me besides selftesting, is that I write everything on a paper; a new drug (how many and how long time) exercize (how many minutes) etc. When the INR is high I take more K-vit rich vegetables (writes the amount). CONSTANCY in everything is the key. It takes 2 - 3 days to get the INR up but with vegetables if goes faster to get it down. I can get my INR down in 15 - 20 hours with some big brouzelstprouts.If i change my Warfarin doze (2 tablets of 2,5 mg) I do it with 1/4 of a tablet and WAIT a couple of days to see how it works. Then if it is not enough I take 1/4 more and wait 3 days more.

We are all DIFFERENT but I think my INR is difficult to control that is why I selftest.

Kerstin

[Debbweb01]

Yes because i now have RA he says it wud help! Also was tested for Sojerns the other day at docs as I'm having trouble swallowing again! Had no idea my swallowing troubles had to do with Sojerns till Mary told me! That's the initiative reason I started with Neurologidt! He told me I had a bad virus running thru my body! Two weeks later DX'd with APS! I had JRA as a kid who knows wen I got it bak! All I know is my hands hurt and hard to open cans now! I shouldn't b surprised! My eye doc approved me to start Plaquinil! Got note! So we shall see! Why so many body aches? I can't stand it at night and can't sleep well! I've been sleeping a lot more lately! Very exhausted! If I do stuff in morning, by afternoon I'm ready for a nap! I just have no ENERGY! I hate this in my life so not me ! I'm always been on the go and now in STOP MODE! Rest a lot! Does it ever get better wen ur coagulated correctly?

[Lure2 in reply to Debbweb01]

I should say that you have never been enough and properly anticoagulated. The INR was too low.

Now you have finally met a Specialist who wants to give you Plaquenil. You have several illnesses Deb, I am primary APS so anticoagulation is very important to me. You just have to trust that Specialist and hope he will continue to help you and your sister with all the different drugs you may need. It may take some time but my advise is that you hold on to him and let him remit you to the different Specialists you need. It is a trial and error sometimes. We are all different. Some of us do not only have APS but also Lupus and Sjögrens and thyroid issues. Difficult to treat sometimes.

Kerstin

[Debbweb01]

Thank Y'all for your amazing responses!!! You gave me awesome articles to read! I'm amazed at HOW U CAN FIND THEM! God Bless Y'all! I just want to be me again and I havnt seen Debbie for tha past 8 months! Hope she the real Debbie gets back to the nutty funny person she was! I don't like myself like this!