Sticky Blood-Hughes Syndrome Support
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Warfarin ? Self dose

Hi happy new year,

For several reasons I feel I know what dose I should be taking for Hughes syndrome i am on warfarin. I have a couple of times been given different advice over the phone to the letter I have been sent about the dose

Just wandering how many others self dose with Wararin.

I have my own machine and I would increase my dose today as my inr is 2.2 today I know I need to increase my warfarin as my target is 3.5

I will phone the clinic. Tomorrow

Karen xx

8 Replies

I won't say I have never been tempted to self dose but have never risked it as warfarin is a dangerous drug. I have a contract with my clinic for a twice yearly machine check and depending on how stable I am to phone when they ask me unless I am out of range. I have been doing this for four years and it has been successful. Only problem I have now is that I will most likely have to start paying for test strips.


I have self dosed for 3 years now. Not having the home machine I control the dose with my wifes help. ( she is an RN) I have a blood draw once a week. Had 2 strokes exactly following the Coumadin clinics advice. So my GP said that since we were doing so well with it, then ignore the Coumadin clinic instructions. I cannot advise this for anyone else, as I once again have a spouse who knows what she is doing. Keeping well hydrated and excersize plays a big part of the formula.


I have been self testing and self dosing since 2004. Prof Hughes recommended I get a machine but my local anti coagulation clinic said I was not allowed to use it. However my then GP was happy for me to use it. As I was banned from the hospital I was on my own. I am on my second machine, I have never had INR double checked or machine calibrated.

Balance is hard but as hormones, food and lifestyle effect warfarin it is not surprising. However I have had no adverse effects from being in control, like bruising and bleeding. My only problem is being unable to stop my INR falling.

In your situation I personally would use fragmin if my INR was so low and add 1-2mg of warfarin for 2 days and then retest.


Jade, it would be wise to have your machine checked against another machine a couple of times per year. Do you use CoaguChek? Ask your GP to find a pharmacy in your area that do INR checks with CoaguChek so you can take your machine with you and test yourself both on your and their machine. If the result is within -/+ 0.5 your machine is OK, if not it should be returned to CoaguChek for a checkup.

When I bought my machine this was all set up for me by CoaguChek, although I no longer use it as I am on long-term Fragmin now.


Thanks everyone

perhaps I should have made it clearer.

As it was a weekend and bank holiday I was concerned that I wouldn't get an answer from the anticoagulant clinic.

In the end and I am not recommending anyone else do this as Warfarin is a dangerous drug I know you shouldn't mess about with it,and it takes a while to get into the system


I did self dose with warfarin and Clexane and sent an e mail to the clinic this am to say what I had done and I am to continue.

I must remember to ask what dose I should take if this occurs again. The only reason I tested was that I felt unwell

I was just wondering if anyone self doses with approval from the clinic, I wouldn't regularly do this without their permission

Thanks Karen xx


Hi Karen, i think i have won the trust of the anticoagulant clinic and we work together. When I have adjusted my dose, i always let the clinic know. Having the coaguchek machine now gives me the evidence because as i expect for many of us - i could predict by how i felt if my inr was out of range. My target is the same as yours and if below 3 i get symptoms and over 4.5.

The thing is ultimately we do need the experts but during long bank holidays or weekends and before my machine i would stick to what was my instructions but would suffer and thats seems wrong because by adjusting my warfarin myself i could avoid symptoms. I always tell the clinic what i have done and by adjusting my warfarin my inr target is correct when i have the regular venous checks - i feel confident and with being on warfarin 24 years i believe you are the real expert - doctors can advise but there are so many variances in our control and not that can affects our inr on a daily basis's. Self testing and adjusting my dose as i feel needed has now given me the confidence to travel and i definately avoid symptoms by doing this - after all we have to live with the condition and its side effects so i believe working together is definately the optimal option, and as you so rightly say you need approval from the clinic for this to work.

kathy xxxx


Thank you Kathy, I suppose it takes trust and gosh you have been on Warfarin a long time you should know what you are doing. I try and guess what dose that they will put me on. So glad I have my own machine it's been worth every penny, ( Birthday and Christmas present 2011 pity it's not free, at least I have the test strips on prescription though.

It saves me worrying as I say I can tell ? I think I feel light headed when its high and more fuzzy headed when its low. Interesting when it was low I must have been the warmest person out there, unusual for me


Hope this makes sense Having a sleepy day today


How do you guys self dose? My GP said I'm not allowed to self dose unless I have been on a anti-coag course in Birmingham?? My INR Clinic have also told me they are not happy for me to do self monitor as my machine is always between -0.6 and -0.9 different top theirs!?

MJ x


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