I again am in a battle with my INR people here. I thought that Dr. Hughes did an article on where people should be . And as i remember 3.5 to 4.5 was the range .
I am as most of you know an APS triple primary with lots of other dia. problems --i am also SO far from being a bleeder it isn't even funny . .
My clinic woman has had me trying to get up in my range now for 3 weeks and i haven't budged I need to get that INR up as i think this Micro clotting that i have been discussing recently is the cause of my horrible pain. My hemo doesn't think it makes much diference WELL i don't believe it for a minute and am getting pretty frustrated and sick of this pain SO I am suppose to be getting an EMG {that's if she approves } and if not i want to take the battle to her myself BUT first if i could find that blog he wrote or keep going back thru my e mails in Health Unlocked and locked but it will take me for ever -So if some one of you have it at the ready could you please send it out - I have just gave my Coumadin Clinic woman the new site GHIC but i can't myself maneuver the site to find it - but i will keep trying . Thanks to all C & J
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I am guessing do you live in the USA? I saw Prof Hughes & was told that I needed to be on a theuropedic does of Coumadin/warfarin which is 3.5-4.5. Anything lower than that just doesn’t work. It may just maintain. But stabilizing our INR is only part of the picture for us; vit.D, B, iron, thyroid etc...
As far as the Coumadin clinic they take orders from the dr. So your doctor needs to write specifying the INR range. The dr. Is probably doesn’t want to write the order because of the risk factor. I had the same problem. You can produce as many articles as you want but if you live here in the USA good luck. I had to get a letter from Prof Hughes stating I needed a INR between 3.5-4.5 (he was my dr). They still pushed back until I flat out told them because they haven’t been listening to Prof Hughes the disease has affected my neurological system & my heart. Then reluctantly they wrote the order.
Either your Dr needs to write the order or you need to find another dr. Designer16
Yes Disigner- i am from the usa -I live in New Hampshire .And you are correct - the Doc's here are VERY reluctant to allow a high INR - like i said i fought for 3 years with my Hemo to get my 2.5 to 3.5 range set . i told my clinic nurse to let me know when she was going to call my hemo and she didn't i told her that my Hemo was a tough sell. what i need to do is to get my INR 3.5 or better and leave it up there for a few weeks to see if this micro clotting in my nervous system stops -or at least RELIEF would be great. but i am going to start this battle with all the info you guys got here plus what mary sent me .i got the week end to get it in order and Monday Morning i will start with the clinic nurse. Thanks again All
Why don,t you - and the others with problems - by a self tester (Coagu-check) and do the job yourselves. I have Lupus and APS and use Warfarin. I live in Spain and got totally fed up with doctors knowing less than me about those sicknesses and anti coagulation. So my daughter, living in England, bought one for me and no I am totally independent of silly docs. Very easy to use and test strips can be bought without prescription.
Sadly not everyone is able to use the machine. When I had one my results were widely variable both lower and higher, so I was unable to use one. That in spite of trying to will the unit to work as hard as I could ;-). Having control in your hands is a beautiful thing. And your daughter is wonderful.
My INR is SO erratic it is overseen and controlled by my Hemo who is in the furthest hosp. away BUT that doesn't matter until i have to go and see her and that as my luck has it is usually at the end of the month when funds for fuel are at their lowest oR nonexistent .. HA HA down to a dollar in the old checking acc. But you are correct in your advise . I am the poster child on here for erratic and dangerous INR spikes and plumbetes . the app. yesterday was a wash as i was praying WOULDN'T be but it got sent to Hemo and i knew at that time what was going to happen .This why a name of Mr. Murphy was given to me and also their GPA .and it doesn't stand for grade point average HA So i will keep trying to find another way to spark some change - who knows maybe a cattle prod Ha Ha o . That actually could be used on me and to quote one of our great past administrators { Jet you will make me come over there and give you the BOOT in the Butt }She hangs her hat in the UK along with another past fabulous adm. .. Thanks for your help Des. C & J BBN
My sister had to go with lovenox which is low molecular heparin and is doing much better. She could never get her INR right. Hope you get to the bottom of this.
Right INR? Short answer: no one knows, there is no evidence, depends which expert you ask, as is often the case where there is little evidence there is plenty of opinion...
Long answer: The international expert task force recommendations are available online here:
Essentially they say 2-3 INR unless you've had an arterial thrombosis (which mostly means stroke in APS), in which case the recommendation is 3-4 but with large footnote that basically says a wide range of others option are also valid, and the evidence grade is none, because they couldn't even agree how little evidence there was...
It also depends a lot on your particular case. It isn't true that Prof Hughes says that every APS patient should be on high INR. He has some people on higher INRs but his team also did the RAPS study which _only_ considered patients on 2-3, so even they are not putting every APS patient on 3+ (there were over a hundred in the study so they must have hundreds on 2-3).
It is also important to note (and may be an argument worth trying) that none of the guidelines (as far as I know) cover daily/continuous symptoms from APS, they are all about what is the best INR to stop you having another clot and dying. If you have symptoms that are INR-dependent then you can argue that the guidelines don't apply to your case. Prof Hughes used to do heparin trials (maybe still does) to establish level of anticoagulation that stops symptoms and then put people on the equivalent INR - which seems a very reasonable, if not blindingly obvious, approach, however I don't think there is any evidence for it at all.
Hi there, sorry you're having a such a bad time, you are not alone. You haven't mentioned whether you have had any clotting events yet, as that may be why they're more reluctant to raise your INR higher?
I truly understand that with a lower INR you are constantly symptomatic and so suffering every day. I'm experiencing the same problem and I feel like I'm being left completely untreated and constantly symptomatic and in terrible pain too because I'm not therapeutic.
I'm utterly stunned by how many patients are left like this, when simply raising their INR could make all the difference.
I'm still fighting to get an APS diagnosis despite having had multiple PEs, DVTs, TIAs and Chest. I've also had three raised lupus anticoagulant blood test results and have letters galore from my previous haematologist and from my medical records when an inpatient due to having had PEs, stating that I needed to maintain an INR of 3.5-4.5 because I had pulmonary embolisms when on Warfarin with an INR of 2.4.
I have been diagnosed as having Chronic Thromboembolic Disease, which is basically just a term used for "we don't actually know what sticky blood condition you have but you definitely have sticky blood"!
I think if you can get yourself a Coaguchek machine as sissik44 suggests, that would be a great help, you can then self test and self medicate.
If you take your Coaguchek with you to the clinic and test your INR level on it against a vein blood test a few times, you will then know how they compare.
When I was self testing my Coaguchek readings were usually about 0.3-0.5 lower than the vein readings, for example if my vein INR was 3.2, then my Coaguchek would read as 2.7-2.9. I could then be confident when I self tested, knowing that if my INR on my Coaguchek was 3, then my actual INR was at least 3.3, hope that makes sense. The finger prick test is usually is slightly lower than a vein test because as soon as the blood leaves the finger it begins to clot.
As others have suggested, you really do have to have your target INR level in writing from a haematologist, before the clinic will allow you to raise your dose and you really need to be under a haematologist who understands APS and preferably is knowledgeable about Professor Hughes work.
It's so unfair that even with an APS diagnosis, you still have to fight so hard for the treatment you know you need. Hang in there and keep insisting for the proper treatment, Claire 🤗
I am a clotter for sure - --I just think it and I clot-- had 3 in left leg in Nov.But the issue here would be the micro clots in nervous system. causing such pain and also in my stomach --and of course my fet - I am testing my blood this morning Tues. 4-24-18 and have hopes of INR going up and then of course keeping it there .Thanks Leak and all
Prof Hughes used to say that he thought all APS patients would need to be at an INR of over 3. He used to use a little saying that blood at an INR of 1 was like whole milk, INR of 2 was semi-skimmed and 3 was skimmed. He started me off with a target of 3 but later increased to a target of 3.5 But I do remember something recently where he uses lower figures.
It all depends on the patient and how easily they clot. It’s a balancing act. INR too low and you clot too easily, INR too high and you risk a serious bleed.
Many doctors these days seem afraid of higher INRs but there is also more research reports into the subject.
This one is one of them and I have chosen it as it has Prof Munther Khamashta as an author and he is totally reliable. He worked alongside Prof Hughes for must be about 25 years and is a leading world expert himself.
There is a bit on anticoagulation that covers the INR and interestingly they are now separating venous from arterial clotting.
I posted “november’s Question of the month ... it helps with the answer to this, did you see it? It’s a couple of posts up or down, I tried to direct it to your attention at your bell above?
I'm OK Busy day -- still no answers- Appointment on weds 25TH-This is when I wil find out hopefully about EMG - Inr didn't budge still to low -test again tomorrow - hopes it has gone up and DO have some of the info from you guys for My INR clinic . i gave her the site on friday WWW.GHIC.WORLD and asked her to call me . BUT nothing so far from PCP amd from him he may wait till weds 25TH . And it is only 6:30 PM here now so i could possibly hear from her up till in and around 7:30 I guess . Been pushing the legs some more still pain !! and feet may not recover as much as i was hoping - I went to long without the orthotic's and could of done permanent damage there ?? i hope not . couple of flares today , but thats not out of the realm. I still have more to do with getting ready for Weds. After blood draw tomorrow i will come home and get back at that - I have copied about 16 pages so far - need to highlight tech points and then continue with the rest of the sites i haven't gone thru yet .If i have to go to see hemo I will need everything in order She is not an easy sell so i will have to be prepared and pushy - but still may not get my INR range increased .But maybe she may have some answers about the Micro clotting and the nervous system . She very good and does listen to me now anyways LOL .that took 3 years {can't rush these things you know LOL } So seeing her is going to be a bifold appointment If and when that may or may not happen - BUT if PCP doesn't have what i think should be done than i will push him to set the stage for round two .Thank You so much for asking about me makes me feel warm and fuzzy all over . And i am sorry for not getting back sooner i have 4 major things going on with my life right now and it can get overwhelming . But tuck and roll so they say .
Thanks again all If i don't get back then give me THE BOOT again !!!!
Boy that could prove to be very interesting Ha Ha . well with 26 Dia. med problems we would have lot to discuss !!!! to say the least. And if my PCP was there he would be shaking LOL Not really he would love all the info that would be SO available from ALL of you people ! So when do we want to set a date !! Concord International airport just 9 miles away !!!! Short landing strip . Good brakes on the bigger planes a must or a net !!!! LOL
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