So the INR saga continues. Two weeks ago 3.2. Raised warfarin by 2mg in the week then... last week INR 4.2. Leave dose the same. Then... today 5.2
My target is 4.0 but at 5.2 I feel fantastic. The best I have in memory!!! No headache, no aches n pains, no exhaustion!!! I feel happier and healthier!
But... they have lowered my dose by 8mg this coming week. So I know what's coming!!!
How dangerous is an INR of 5.2.
Any other comments about my predicament?
Love Wendy-Woo 💋
First of all do you selftest at home? I think you should do that and monitor your own INR if possible. Easier with Warfarin.
I have a difference in INR between the fingertop-test with my CoaguChek XS and the test in the vein at the hospital lab. It is a rather big difference. When I have 5.2 I have perhaps 4.0 in the vein and that is perfect.
So do you selftest?
Best wishes from Kerstin in Stockholm
Hi i am glad i am not alone mine has been 5.2 for the last couple of weeks and felt well until the weekend then i become very unwell the hospital like mine between 4.5/5 i had mine tested through my portacath Tuesday and it came back 10.5 very high so i was told to miss last nights dose and the go back on 35mg tonight until Friday mine has to be tested twice a week for life as i have had so many PEs and Clots. I do get fed up with people saying it cant be that high but unfortunaly for me this is the case , i do have fantastic consultants and gp who are always trying to do there best for me but as i have Lupus and antiphoslipids its very hard to control along with a lot of other medical problems,
I have learnt to accept it and jus have to rest until things settle again.
Take care
Rachel
My goodness if it's that high why do they have u on 35mg of Warfarin?
I'm usually on 20mg daily but now on 19mg.
Are they not giving u vit K. They did me when inr was 7.8
Take care x
The reason i am on such a high dose i kept getting clots and PEs and if i take anything less than 35mg my inr is very low like 1.5!
I was given vit k once and the consultant was very unhappy as within 24hrs it dropped very quickly and he said that was more dangerous for me so now they let it fall on its own.
Take care
Rachel
I wonder if fragmin would be better... easier to control?
unfortunatly i am allergic to it .
I don't know how dangerous it is but I completely agree with you. my INR was greater than 8 last night, & I was saying to my GP how good I felt when INR running high. My range should be 3.5 to 4 but don't always feel good on that . I had no wafarin last night & know by tomorrow my inr will be way too low so I will end up on foundaparinex injections, alongside my wafain & feeling rubbish ..
Hi Lind8,
I understand you are selftesting.
I do not think you INR will be too low at all tomorrow.
Usually they say that you should miss two days of Warfarin when the INR is that high. That is really high. I have never been so high. Now you missed one dose.
I do not know what they have said to you. It takes 2-3 days sometimes more to stabilize the INR after a high or low INR.
How often do you normally test your INR and is there a difference with the vein-value at the lab?
Best wishes from Kerstin in Stockholm
Hi Thank you for your reply. I don't self test as there is always too much variation to veinous results taken at Drs. I have weekly sometimes twice weekly blood tests at GPs. My inr is never stable and quite regularly goes from greater than 8 to 1.5 the next day. The hospital say it is because of my epilepsy medication than it just will not stabilise. I have been on warfarin for 30years since I was 19 and it has always been this way. I just wish there was a new drug that worked, but we live in hope 😁
What does your Specialist say about those variations and you only take veintests once or twice a week.
You must test every day as you know that the INR has droped that much as from over 8.0 to 1.5! In one day!
Have you lived 30 years with your Warfarin swinging like that?
Have you tried LMW Heparin?
Kerstin
Hi my haematologist have had many meetings. I have lived with it Never being stable for 30 years. I have many times been on daily INR tests. Unfortunately I am allergic to heparin and when they tried me on foundaparinux alone I had a stroke. So now on wafarin 20mg daily & when inr drops below 2.5 have to take daily foundaparimax injections as well, ( but am developing an allergy to foundaparimax now too) They did look at the new drugs that do not need monitoring but have decide I am not suitable as have had too many TIAs & have a prolonged bleeding problem and there is no reversing agent for them. I don't think any of us have it easy, but we somehow manage to plod on & hope for the best 😁
Have you never thought of selftesting?
Are you Lupus Anticoagulant as then if can be difficult as some of us have big differences between vein-test at a lab and fingerpricktest. it is the vein-test at the lab that is reliable and counts.
I am LA and have big differences between the two bloodtests- When I started selftesting I had to go to the hospital and take double-tests both in vein and with my CoaguChek XS I had taken in the morning. did that a lot of times and we knew that the difference was always the same and with a bigger difference on days when my INR was higher.i
Have you during these 30 years ever been stable and at a rather high INR-number? I know that epilepsy is a wellknown symptom of HS and I wonder if the epilepsy could be much better if you were stable and more in range with your INR. We have to thin our blood. That is the key.
Also this Hematologist does he know HS and autoimmun illnesses well, otherwise you should also change to another Specialist who could look into a couple of issues that would help you and your situations that at present must be difficult to live with.
Kerstin
Hi thank you for your reply it's very interesting. I am LA. I did what you did and daily self testing at hospital and had it compared to daily blood test drawn at hospital at the same time. Tried daily for two weeks but variation was never the same between both tests ( although that was when self testing first came out, and I wonder if variations would be more accurate now machines must of moved on??
My epilepsy has been well controlled with medication ( hospital have said I will always need medication for it) but it is just the interaction between wafarin and epilepsy meds that seems to cause the INR to jump all over the place.
My consultant is on the list of hemotoligists on this site and has been brilliant, if I ever leave her a message she gets straight back to me. I have another condition called storage pool disease which means that my platelets don't work properly. It causes me to have prolonged bleeding but then the APS is causing clots. So both conditions do opposite things 🙄. They were really worried about putting on warfarin as didn't know what would happen, but I had had 5 miscarriages and my epilepsy had started and was having multiple TIAs in all of my body. This storage pool disease prob doesn't help with controlling INR either. It's a minefield but I just know I feel clear headed, my speech is better & I have less aches when my INR runs higher than its meant too. APS is such a complicated illness 😒. Hope you are keeping well, you seem to be managing to control you INR fairly well. I just live in hope that their is a way through this minefield Thanks again Linda
I think you write very good and I would never believe you had brainfog or neurological symptoms.
All the same I wonder how long time you have had the "storage pool disease" with prolonged bleeding. Did it come after the HS/APS?
I can not help I believe you need one more Expert Doctor. It must be very difficult for you to have control of all this.
What does your Hematologist say about the very different numbers of your INR? Does she accept it or what does she suggest you to do?
Could, as we use in England and Sweden LMWFragmin/dalteparinnatrium in shots, be something you could tolerate instead of LMWHeparin? Just a thought.
I am not a Doctor and I do not know what you should do but I believe though that you need to be investigated further.
Kerstin
It's such a nightmare. Knowing we can feel great but aren't allowed to 😞
I don't self test
They never take a vein blood test. I have asked them to do that occasionally but they just say there is no need.
I have weekly finger pricks at chemist.
This saga is forever continuing.....ugh
No one has actually answered my question - is an INR of 5.2 dangerous?
If so why and what is the max safe inr. 💋
Sorry I had a talk with Lind8 so I hope you are not angry at me. It had to do with Warfarin though. We learn also much from other members I think.
You answered that you do not selftest. Then I wonder if you are Lupus Anticoagulant as there may be a difference between a vein-test and a fingerpricktest as to the iNR. It can be a difference even if you are not LA though.
That is why it is important to take a veintest also.
Let´s say you have a fingerpricktest at the Drs with 5.2 and then the "real" value is in fact an INR of 4. I am not saying it is that way but as they have never tested you you can not be sure.
So when you feel good on an INR of 5.2 perhaps you are like me not so high at all. I feel fantastic on an INR of 5.2 as my "actual" INR in the vein is perhaps 4.0, but I am Lupus Anticoagulant.
So I can not say if it is too high or not as we do not know your vein-INR. This is tricky business! Hope I have answered your question now. At least I have tried to.
Kerstin
I don't do anger. Well not about little things lol.
Your answer is very informative thank you and makes sense. I'm seeing specialist 24th so will talk it through.
I was lupus A + once but with symptoms I was diagnosed as having Hughes & put on warfarin
I will also try to get the Tyroid tests done. 💋
I do not know what you mean with "Lupus A +" so I do not know if you are Lupus Anticoagulant (one of the three antibodies they take to diagnosed of HS/APS).
Have your Specialist taken new HS-antibodies the last years? You can not take Lupus Anticoagulant now again as you are on Warfarin but the other two is possible to do as they do not interact with the Warfarin.
You have to find out if you were tested for LA and also talk with your Specialist on May 24th and insist on taking venous draws.
You could perhaps find interesting comments for yourself in my answers to Lind8 as it is important that we know a lot about our own testings with Warfarin which is tricky indeed when we have this illness that first of all need a proper anticoagulation and most labs and anticoagulation clinics know nothing.
Kerstin
Also "insist" (not try) on having those Thyroid done as Mary and APsnotFab talks about. Only TSH says nothing so you have to take;
FT4, FT3, TT4, Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies.
Also Mary says: Ferritin, Folate, Vitamin B 12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH) REVERSE T3, Insulin, HbA1c, Magnesium.
Good that you are seeing your Specialist on May 24th so you will have the opportunity to talk it over. Fingers crossed for you!
Kerstin
You must be at your wits end. Speak to him or her about lmwh too!
Yes I am Witty, but what Kerstin said makes so much sense - if I can get them to test my venous blood and it showed that 5.2 FINGER PRICK WAS WITHIN MY RANGE VIA VENOUS TESTING. It would be a miracle!!!
I found that Spire Hospitals do thyroid tests £199.25 for:
TSH FT4 FR3 TPI Abs Folate B12 Vit
I am sure the specialist does C-reactive protein each month as well as FBC, LF
Is that OK or is there somewhere better to go? I am in the South-East of England.
I would private message Mary she's usually good with that I think?
See my answer;
The difference is perhaps only if you are Lupus Anticoagulant so you must find out it they took that antibody before you started Warfarin. Ask to see the tests!
I have copied (written) the tests that Mary has written earlier some days ago.
Kerstin
Yes Lupus A + = Lupus Anticoagulant Positive
Ok! Thank you if LA is positive there could be a difference between the two bloodtests and so it would be exstremely important that they
...went away again..... take both the fingerprick-test and the vein-test and look at the difference. They have to do these tests several times to make sure that the difference is always the same. Then you can start selftest.
If I take a test ( with my CoaguChek XS) and I have that day an INR of 5.0 I can have 4.0 but also 3.7 in the vein at the lab (only a couple of hours later you have to take it and they must send it at once to have the answer.
It is a tolerable difference (0,3) If the INR is high one day the difference is bigger. I have made notes of all my tests for several years. We are all different and I am triple-positive with LA and persistingly high antibodies. You must find out how your body works as to Warfarin and antibodies and INR-levels and you need help with that.
Kerstin
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