Sticky Blood-Hughes Syndrome Support
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Morning.rollercoaster inr :(

Morning ev one hope every one is ok well as ok can be.

I still on a roller coaster with my blood it to thick now :( so injecting myself daily with clexane :(

Been diagnosed with aps and sle just over 11 years and I would love it if my blood would go thin inr of 4.5 and no more bruises on my belly from the clexane .right moan over .does any one fancy meeting up for a cuppa I live in Bradley stoke Bristol

9 Replies

Hey Jo ... I'm sorry I don't live in your area, but I do know where you are coming from with ref to your inr.

I have been again today for my inr check (it was done 2wks ago and 6 days before that) and today's has been well and truly up. On the 3rd Aug I had 2 bleeds in my left leg (knee and calf). The pain was terrific and when inr tested it was 4.6. I then went again on the 9th Aug and it was 2.1 (go figure !). Today it is back at 4.6 (at the moment) as I am waiting for the inr clinic to phone me with the results of the venus one. I've also got the bad pain in my left leg again but no humongous bruise as of yet.

The higher in number on your inr the thinner your blood. so 4.5 is thin. What inr level are the clinic aiming for? My level is 2.5 to 3.5 ... anything over that is bad for me and obviously if under.

I used clexane when I was pregnant with my daughter and had to inject myself in the legs, 9mts of daily injections blah ... I'm currently on an oral tablet called Sinthrome (that's the generic name) and my bloods have been steady on it for quite some time until recently. The clinic and gp think it is the painkiller Gabapentin that is doing it as I have had to increase it dramatically since I was in so much pain, but that doesn't explain why the inr was at 4.6 on the 3rd as I hadn't increased the painkiller then ... weird.

Hope you get sorted soon and come on here and have a moan any time. Best way with fellow sufferers that understand. xxxx Trey xxxx


Hi there, it sounds as if you are making the best of things and your local medical care! I hope things get better for you, and perhaps with a few less bruises! Mary F x


If you can afford it, get a Coaguchek meter to test you INR at home. It will help you learn what effects the INR.


Hi ya thank u for all yr messages back:)

I would buy myself a coaguchek but been told by consultant that it not always a true reading especially if I'm havin a lupus flare up, :(

My target inr is 4.5 and if it below 2.5 to inject myself.

Thanks for listening to moan .

Jo x


A lupus flare will not effect an accurate INR. You should do your own research rather that take the word of your consultant. Many doctors here use the coaguchek in their offices. I have used mine for years and it has always been consistant.


Okey dokey:)


Very true the self check kits are not accurate for aps patients, the companies even tell you that. I almost died from them being wrong..


All of the coaguchecks have a disclaimer that they may be inaccurate in APS patients. I have had extensive discussions with people from these companies and that is what they all say. They may be accurate sometimes but if your APS flares then the readings may become inaccurate. The reagents the machine uses can interact with the antibodies and the amount of antibody can change over time. The only safe way to do it is to use the home machine in conjunction with a blood draw done in the clinic (the latter say once a month) to ensure ongoing accuracy of the machine in your case. There are warnings from APS patients on google strongly advising not to use these machines if you have APS.


Hi ya . Yeah that's what my gp in Ipswich told me that an coaguchek machine only good to use if having blood test st hospital to compare it x


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