INR - part 3!!!!!

Hi, a little update .

I can't seem to shake off this migraine, I can feel it actually moving around my head is this normal lost some sight in right eye too for a little while, it feels different to usual.

I keep forgetting little slots of daily things quite a lot at mo', forgetting doing things just remembering parts of conversations & worse than normal losing track of conversations half way through :(

Tingling & numbness in face & right arm & legs too :(

just come back from inr test.........still only 2.1!!!

been on a high dose of warfarin for quite a few weeks now & it's not changing! now I'm on 9 & 8 alternative days & I have asked to see a doc to discuss having those clexane injections or something to push it up...I don't know what to suggest & I know they wont too as they don't understand APS

I also want to see if they will ok it for me to self test if I buy the machine myself.

I feel like my body is giving me warnings....& I've no-one to shout to , to get help!

Hope my Hughes family are as well as can be & to you all xxxx

9 Replies

  • hi sue , you should be seen , that doesnt sound good , have they checked for clotting? have you told dc about this in particular to those symtoms? your friend jet

  • I noticed this paragraph on Prof' Hughes blog of this month:

    'Hughes Syndrome patients often require a high INR – especially those with headache or balance problems. In the past, this has often led to difficulties in the anticoagulation clinic, where lower INRs – for example 2-2.5 are the norm. This year at the Anticoagulation Education Day, there was a far wider acceptance of the need for better control in Hughes Syndrome patients, but also of the value of self-testing INR kits and their use in parallel with the anticoagulation clinic’s control. '

    I wonder if it might help me to convince my doc' to let me self test?

    I have been offered a machine by a fellow Hughie, so it wont cost me as much as a new one.

    Hi Prof' Hughes if you're reading this :) would be great to chat one day!! thanks for your great work!!

  • Hi Sue

    Go onto anticoagulation europe website - they are ever so helpful and there has been a lot in their review about pushing for self-testing for people on warfarin.


  • Hi Caroline, I'll have a looks like the docs will be supporting me...I will know more Monday xx

  • hi sue . while you are standing in front your dc, STOMP ON HIS FOOT then say, now i got your attention, we need to talk !! we have moved my target range to 2.5 --3.5 ,we dont have any luck keeping it there but we try. i havnt had any bad balance or total site loss for some time now./ maybe thats the reason i not sure. let me know how you make out jet

  • Lol...OK I hope my 'goth' boots come in time before I go to docs'!! they're cool & are very 'stompy'....might work ;)

    Thanks Sue :)

  • Hi Suzy, hope you've got a doc to listen to you now. Your migraine sounds a lot like mine do, I get them every 10 days and they last about 4 days but the pins and needles never go away. The only time they every went and the funny words and memory improved was when I was on clexane so fight to get that too. I've read a lot about clexane and a lot of aps patients seem to do well on it with neuro probs.

    Good luck hon

    Love Sharon x

  • Yep my doc' was great today, the letter from London to give him the support needed for a higher inr :)

    thanks to all for your support, I know you all understand xx

  • YEAH!!!!!! well done sue lets hope the high INR works

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