Just wondering how often do you self test, I have proven several times that if I had just weekly clinic blood tests my inr would be under range
I test myself and send result the the anticoagulant clinic with a suggestion of what I thought would be the best dose for me, they didn’t take any notice, so my inr is now 2.2 and having clexane to cover
Going to send email to the clinic now to explain what I have had to do
Personally, I test every three weeks. However my inr stays somewhat steady. When I first started taking warfarin, I tested weekly. One tip I encourage: ever time a clinical blood draw is done, self test also. It will let you see for yourself how accurate your home test is.
Others here may have different tips and/or encouragement.
Good luck getting your level corrected!
I agree w mermaid- must be done side by side to know
I do have it tested with the clinic every 6 months it’s been only out by about 0.3
It’s just that mine changed almost every week, which I don’t mind as long as they take notice of what I suggest the dose should be, as I know what I have eaten or drunk,
Red wine tonight for me I guess
Anyway next time I will question them about it
I have a very erratic INR and self test every three days. I keep my INR around 4.0 and because of frequent self testing my INR is very stable so my quality of life has improved.
Not on Warfarin, but if I was, I would probably want to self test with my own machine at the same time, to see the difference and then be doing it once a week or more if things were not quite right, but others on here will have a better idea than myself MaryF
I selftest every second or third day at home and dose and manage my INR myself. Hospital in Stockholm wants me to test my vein-value every second or third month at the hospital lab and then i take the machine with me and do a fingerpricktest with the machine at the same time. Very small difference between the two tests. I do not have the CoaguChek XS any longer. Hospital has changed to another machine. The veinvalue is always correct.
I am Lupus Anticoagulant positive and my INR can change from day to day even if I usually eat the same greens and only drink one glass of redwine for dinner every day.
My therapeutic range is an INR of 3.5-4.0 and feel best at 4.0.
How often do you selftest at home? How big difference between vein- and fingerpricktest?
Good Luck!
I have a very erratic INR and have done for the last 20 years or so it can go from 2ish to 6plus overnight earlier this year it was 10+
I tend to self test once or twice a week and it usually sorts itself out.
I consider myself lucky there is a very good nurse led warfarin clinic, they know their stuff.
Whenever I need to change dose it is always done in partnership, they say there bit I say mine and we meet in the middle.
J
Hi there
I self test and it has been proven many times that I am better at adjusting my does than they are. I pretty much follow what I have been told but on occasions I do what is right for myself. I test twice a week if I think they are going a bit haywire but other than that at normal times I test myself weekly.
Kaz x
Yes I agree, when being on Warfarin for years we know our body well, I know what I have eaten and had to drink,
so although the clinic have a chart that looks at inr and dose range, it doesn’t always work for me
I can tell when my inr is out of range so that’s when I test also weekly, unless really low to check when I need to stop the clexane cover
I am just going to keep suggesting what I think the dose should be and will question why they want me to have different
Thanks
Hiya. Mine is also erratic and the lovely nurse at my surgery vein tests me twice a week. I prick test just before I have the vein test and I always have a variance between prick and vein At the moment it’s a difference of 1.0. I normally do a prick on a Wednesday just to check as I can at least know a ball park figure of where I’m at.
Hi ageingfemale;
How old are you now? - I am 76 at present. I read that you have had operations and severe valve-issues before. To be tested in the vein twice a week is unusual but they want to make sure your INR is behaving in the therapeutic range all the time. What is your therapeutic range set by your Specialist at Guys?
I also how Pulmonary hypertension and 2 leaking heartvalves. That fenomen is rare and serious but goes with this illness in some rare cases. Therefor it is important to keep the INR in place. Do they let you have Ecocardiographie with doppler to see your valves and hypertension in the lungs? Important not to have too high bloodpressure also.
So you also test in the finger. That is good but it would not be necessare to do that every time you veintest. Usually there is the same difference between the two but of course we must know how big difference. The vein-test at the lab is the only reliable test.
Hiya. I will reach 60 on Monday!!😱 My inr can be stable for a while but any slight change in me and it either shoots up or down. My range is 3.5 to 4.5. I usually feel fine at 4.2. I now have, diastolic heart failure, angina, 2 interstitial lung diseases, chronic kidney disease stage 3 and 2 months ago i was told I am now diabetic!! I’m taking 26 tablets a day. It’s my balance these days that has gone. During the lock down I was vein tested once a week and would self test to see how it was doing.
I hope you have a very good Specialist for all your issues with APS. Try to test as often as you can to follow your INR. If your INR goes down under 3.5 I hope you have something like a Fragminshot to take. I have got that and you should absolutely also have that.
Have a nice Birthday on Monday! Congratulations from Stockholm!
I have tinziparin to inject if it goes below 3.5. I have had so many Tia’s. I was very pleased when I went to London to see a lung specialist who deals with autoimmune conditions and the lungs. She took all information down and was arranging a multi disciplinary meeting with herself, my rheumatologist, haematologist and neurologist, to discuss the best way to go. Unfortunately that was in January and I was to see her again in March. Then COVID arrived. They have rearranged appointments twice but cancelled them and now they are going to be ringing me next month. So we will wait and see.
First of all "HAPPY BIRTHDAY TO YOU!! "
Try to keep your INR where it should be that is important and see to it that they call you very soon. There are many Doctors involved before that meeting.
You can be lucky you are not more than 60.
Have a very nice day and let us hear how it goes for you.
Thank you for the birthday wishes! I will let you know how I get on. You take care of yourself too, you are a valuable asset both on here and I’m sure for your family too.
I am, unfortunately, unable to self test.
I must test at hospital At least three times a week to be anywhere near in range.
This gives two advantages:
1. Micro adjustments in green vegetables at dinner
2. Micro adjustments with warfarin- can’t go a week between those !
3 I know when/ if I need to supplement with heparin and by how much. ( depending on vein draw, that depends on the amount of heparin I inject.
I can go to the hospital any time I want if I feel I need a vein draw. I try to stick to a M W F schedule. I can go more often if I have something going on.
Hi Kelly,
What INR do you have when in range? At what INR-number are you allowed to use a Heparin shot? The Corona has changed normal rutines in Sweden. We try to avoid hospitals now and busses and Underground.
Hi lure.
I don’t like to say here what my new inr range is -but I will... please everyone understand- it is not normal and it is very specific to only me.
After demonstrating by Doppler scans that I form DVT’s at 4.8 or below consistently my inr was set at 5.5-6.0.
Yes, I was switched to LMWH and clotted right away.
I was trialed in very high dose apixiban- twice daily- with clopidogrel- and clotted with two DVT’s , ( confirmed on scans) TIA symptoms and seizures.
So I am back on warfarin. No aspirin with Inr so high.
We are using rituximab as a trial because I’ve failed all else to see if I can lower inr - but I’ve not had a bleed at all. I had my teeth cleaned day before yesterday- less than the average person with regards to bleeding.
With regards to LMWH:
I weigh 115 now.
If I were only on LMWH and no warfarin, I would be on 60mg every 12 hours. ( maybe pushing 65mg. It was 60 mg when I weighed 112 pounds.)
Inr of 4.5-4.8 is where I inject LMWH “depending on my APS symptoms.”
This is the range where I start forming DVT’s.
If I am at 4.5 and not symptomatic, I would inject 20-30 mg.
If I were symptomatic, ( migraine, numb face, chest pain, feeling like veins might be trying to clot) I will inject 30-40. )
This is what my hematologist I have worked out. The lower amount doesn’t hit as hard and is out of body faster.
Hi Kelly,
I did not know you had such great difficulties with your blood. You also have Ehlers-danlos, Sjögrens and those are also difficult autoimmun illnesses with a lot of different symptoms. SLE also?
You talk of chestpain......... have you chequed your bloodpressure, heart/lung. You know this illness so well so I guess you have talked with your Specialist about that.
Anyway it is good that you live so close to a hospital and have good Specialists there.
Oh gosh you must spend half your life in the hospital, hope you don’t have to wait in a queue and it’s not too far away from where you live
I do spend my a good portion of my life there.
My doctor has me go to a lab that’s not part of ED, so it’s safer and faster.
The lab calls him and me directly with the results as soon as they have them, so I can make adjustments as needed very quickly.
( and it’s not very far from my home and the staff are lovely 💕)
I self test every week, my therapeutic range is 2.5 to 3.5, on 10mg of warfarin daily, but I feel my best when it's closer to 4.0! Just can't seem to convince my hematologist to raise it any higher. I currently manage my own warfarin dosage with the advise of the nurses at my doctors office. Have been testing with the CoaguChek XS for many years now, and check it against the lab draws, every time I have one. Although my diet does affect my INR very easily, I just have to make sure I watch how many greens, vegetables and salads I eat every single day.
Good luck with your home testing, and be good to yourself!
I am sure other people will reply to you,but i think you should change your haematologist, do they change your dose or are you always on 10mgs
Good luck
If you start again to make a question of your own problem,you should get loads of replies
As daisyd says you should perhaps change your Hematologist. Does he or she know APS quite well? If not you should try to change! You should probably have a therapeutic INR-level between 3.0 and 4.0.
Are you positive to Lupus Anticoagulant when you first was diagnosed in 2011 (was that correct?) You can not test the Lupus Anticoagulant bloodtest when on Warfarin. Many Doctors are afraid that we should bleed when INR is too high but we do not bleed from this illness but clot a lot. It can be difficult to control your INR if your INR-range is very thin. The best way is to test rather often at least a couple of times every week but I understand that is not possible for many of you in the US. I am from Sweden and I test every second or third week. Triplepositive with very high titres. Feel best at an INR of 4.0 or even a bit highter.
When you selftest is the fingerprickvalue and the veinvalue about the same number or does it differ a lot? Perhaps the difference is always the same then it is easier to control your blood. Write things down. Alkohol (INR gets higher) change the INR like greens. Also new drugs of course, exercise, virus, etc etc.
As I replied to daisyd, I am looking for a new doctor, but finding someone with knowledge of APS has been difficult.
Yes, I was positive, (and still am), for the Lupus Anticoagulant when I was diagnosed in 2009. And, I too feel better when my INR is at 4.0 or higher, but the docs here freak out when it gets that high...
When I have my blood work performed at my hematologist, I always take my machine in to compare the results, and so far there has been very little difference in the INR values. I do keep a log of all my INR results, including daily dosage of warfarin, time of day I test, and I also check my sugar at the same time, (being a diabetic also), and I also log the time of my last meal before testing.
It's just so frustrating dealing with this condition...I have enough trouble just taking care of my self, let alone the fact that I am trying to take care of my elderly parents too.
I understand you have a great job also now in the Corona-times. Taking care of your old parents also.
I think it is good that the difference between the fingerprick- and the veintest result is so small. That makes it easier for you to selftest and know where your real vein-value is. The nurses at the coagulation clinic do not know how difficult we have to keep our INR in range. I am happy to test when in the finger when I need it. I change my greens when it is too high and when it is too low. Less greens when it is too low and more when it is too high. I change my Warfarin (take 5 mg/day) very seldom and if I change I do it with 1/4 of a tablet usually. My Specialists want me to be close to 4.0 as to my lung/heart-issues also. I never have any difficulties with neurological symptoms like before Warfarin. If I have I know that I am too low and if under an INR of 3.5 (decided by my Hematologist) I take a Fragminshot (not a high dose which I also can take twice a day as it lasts only 12 hours). The Doctors know me now after so many years and trust me.
I wish you good luck and understand that I can not help you as you already knows so much and works with it.
Their is a list on here somewhere of Doctor who people recommend, can’t think where to find it though
Could you try and get some information on here too their is a leaflet on here for Doctors
Memory not woken up yet this morning, someone will tell you good luck
Coagucheck self test strips 
Self testing 
