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Sticky Blood-Hughes Syndrome Support
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INR Dropping

Hi, My INR is all over the place at the moment and it takes forever for it to climb back up. Conversely if I stop taking warfarin for whatever reason it drops like a stone and I am poorly. Recently my clinic told me to stop taking warfarin for a day, when I received my level 2 days later by post it was 1.7. In the days unto me getting my result I was taking no extra medication and started to get chest pains when i breathed in. I visited my doctor who said that my INR may have dropped sufficiently enough for me not to be covered. So she implemented the protocol for a PE. Does anyone else suffer from INR dropping like this. I and still bewildered as to why my clinic did not inform me that my level had dropped like this. It does when it is too high, but for us Hughes patients it is almost as bad.

8 Replies

Hi Lesjames,

I understand you have Lupus also. If you use other drugs and change them from day to day it is very difficult to keep the INR in a steady level. But that is important, otherwise you should have another anticoagulationdrug. There is also Fragmin.

First do you have an APS-Specialist and what therapeutic level of INR has he put you on? The best way to handle warfarin is to selftest.

You know ofcourse that CONSISTENCY with what you eat and drink and what drug you take and ev change is important.

Best wishes from Kerstin in Stockholm

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I know see that your clinic did not inform you of your drop in INR!!!

It is not accaptable! You are absolutely right that you must do something about this. Do you have an APS-Specialist?



My target range is 3.8 to 4.0. If I miss a dose I can be close to 3.00 within 24 hrs and that means resorting to heparin until it is back up. I have had TIAs at 3.3!

May suggest that you need a chat with your clinic to make them understand, as it seems they may not, that Hughes patients are different to others who may be on warfarin for a bit of extra cover. We are on anticoagulants to reduce the strong likelyhood of a serious event if our cover is inadequate. We cannot be in the least bit casual about maintaining our target INR.

That it was inevitably taking several days to get results of a surgery test was one of many reasons why I got my own self-test machine many years ago. By the time the result came through it was pretty much dated and useless on far too many occasions.

I was talking to my GP a few days ago and commented on how extremely helpful being able to self-test was, not just for me and my INR but for the surgery knowing that every time they tried me on a new drug or whatever for various issues, that I would always be able to get out of any danger zones that the new drugs etc might lead me towards.

I went on to express my concern that NHS financial issues might affect the surgeries abilities to provide me with test strips. I was reassured that if any such thing was ever suggested from the governing bodies, ways would be found to maintain the supply, such was the value to the surgery of me keeping on top of my INR. I hope that you might be able to convey the same arguments to your people.

Best wishes

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Tim, Thanks, I agree that they do not appear to understand there different requirements for us Bleeders"lol"


I once had to attend a hospital to have a tooth extraction. This was in the days when they thought about having you in for three days to deal with the coagulation issues but this dentist was trialling a new mouth wash that should control the bleeding. I was a bit poor at responding but eventually was let home but had to ring them when it got worse. I was asked, and was happy to call in the next day- which I did.

As I waited at reception, in a room full of patients, the receptionist spotted the doctor in the distance and called out "Doctor X, its that bleeder from yesterday". I knew what she meant, but I wasn't so sure anyone else in the waiting room did. I was the only failure in the trial! :-)


In which country?


I have a self test machine and have had it for 4 years. I paid £300 for it tax free (it is exempt from VAT on Health grounds). The strips I get on prescription from my doctor.When ever you get a new tube of strips you get a module that fits into the machine and it calibrates it to them. Unfortunately my machine is out with the readings given my the DVT clinic, (something I do on a fairly frequent basis to test the accuracy). So will have to buy another.

I'll have a look at the pharmacy route.


The pharmacy facility sounds an excellent idea, but is that in the UK?

I have a cross check every new pack of 48 test strips. Am usually within 0.1 difference of a venous blood sample done at the same time and perfectly acceptable.


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