Sticky Blood-Hughes Syndrome Support
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Any suggestions?

My inr keeps on fluctuation , was 4.6 and was on 11 mg of warfrain blood test Monday inr 3.3 so now on 12 mg , seem to be going 1-2 times a week for inr venous bloods , any suggestions ? Fed right up with having needles stuck in me for nearly 13 yrs and only 33 I was diagnosed with aps 2002 after having stroke before I had stroke I had 3 Dvts and 1 PE and I was not picked up until I had my stroke

8 Replies

It is difficult for us with APS to keep a steady INR.

Have you thought of getting a selftesting machine? Is it possible for you?

Write everything down in a diary for your warfarin; If you change drugs, food, INR and the amount of K-vit rich vegetables and also the amount of warfarin.

I was diagnosed in 2002 and started warfarin in 2011. Started selftesting one year later.

What therapeutic level are you on?

There are also other drugs for us to keep us anticoagulated. If you have been on warfarin 13 years already with this unsteady level the APS-doctor must have a reason why you must stay on warfarin. I do not know.

Best wishes from Kerstin in Stockholm


Hi, you may be a candidate for self testing at home in conjunction with the hospital clinic, NICE have now approve this, it would be a good idea to ask about this if you are staying on Warfarin, unless they perhaps plan to try you with something else if the fluctuations go on too often. As Kerstin says, anything including diet, drugs, virus etc can cause the INR to jump about.



Possibly, you should be on Enoxaparin. I suggest that you seek the advice of a hematologist.


Need to go back to your haematologist. This happened to me when I was on warfarin and eventually got changed to Clexane injections. However after a year I developed a DVT and then switched to Rivaroxaban plus 100mg of Aspirin. I was glad to get off Warfarin as I have difficult veins and the girls used to shudder when they saw me come in twice a week!! Eventually only place they could get blood was out of my foot-and that really stings :(


Yes I had a stroke last year that's when they found out I had APS my INR not been good but I am only on 2mg a day then 3mg on a weekend had a black eye last week not banged my self or any think and nose bleeds evey morning so DN came a week eary to do my blood they say my INR sould be 2.3 last week they was 2.2 then Monday they gone up to 2.8 but still to take same meds and have my bloods done in 2 weeks what have they told you your INR sould be cos you are on a lot more then me mines been as low as 1.1 and up to 4.8 hope you get sorted but I know won't you mean about needles cos my vanse run away as soon as they see one xx


Hi sorry to hear what your going through , I have the same thing my INR has been all over the place i have bloods taken twice a week now for life i was 25 when diagnosed and i am 45 now still with all the same problems . i take anything from 30mg to 50mg daily my INR monday was 1.9 on 45 mg. now on 50mg yet again and wait for result tomorrow when its taken again. I get told they do not no why this happens but i am not alone some people are lucky and its stable but unfortunately for me thats not the case.

I have had 18 clots in leg and 4 PEs in lungs, Also miscarriage when i was 20 and DVTs and it was not picked up for a very long time.

I have just been referred to haematologist as the one in my local hospital has left and not been replaced so i am hoping they may be able to offer something else but i can not have heparin as i am allergic to it.

Also i am on a lot off medication , i am not aloud to self test anymore as i was getting PEs and clots still.

But it may work for you.

Good luck x


Hi mgammon,

I do have a similar problem. Recently I was put on steroids sent my INR to 4.00 then put me on penicillin to counteract the steroids, then another antibiotic to counteract the penicillin in steroids. INR has gone luppy and since then cant get it lower than 3.8. Like you blood tests twice a week. Poor arm full of bruises that dont go. If anyone has an answer help please.

I have been told I can self test now but the machines i am told are £1,000 plus each. Can anyone tell me what to ask for??


I don't think they are quite that expensive - more like £300 when I looked on line last I think it was Coag-check or something similar. As it is now recommended as part of a NICE guideline, perhaps they will loan them through NHS? I am going to ask about this


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