Would anyone know if Dr Graeme Hughes supports patients self testing using a Co Agu check monitor?
As I have been told after 15 years I slipped through the net and should never have been doing it ,despite getting the go ahead from a consultant at the time.
I have tried to get the decision reversed but was told its not up for discussion!
Prof Hughes absolutely recommends self-testing for many. (In my case every other day at least.)
Not sure of the point you are making, it is usually the case that people have problems getting support for self-testing. Am I missing something?
I would not have thought you need to self-test if you don't want to but would prefer to go to clinics or surgeries every so often for an INR check.
Yes Professor Hughes approves of self testing I self test .
Many thanks for your reply ,because in and out of hospital every week is cracking me up !
I was self testing for 15 years with the approval of my consultant but he has moved on ,I had to have an injection into my hip recently and this is when the problem started ,I was told by the consultant radioographer I have to be off warafin for 10 days,the rheumatologist said she was not happy to have me off warafin for that length of time,I wd not be happy either.
Then it was discovered I was not linked to a warafin clinic and the consultant over the clinic will not allow anyone with APS to home test and will not discuss it,I feel its sad that in 2015 the consultant sent me the message via a nurse "its not up for discussion".This is a hospital in Dublin a sad reflection on doctor /relationship!
I have yet to talk to my rheumatologist but can't see one going against the other but maybe I'll be surprised!
You do seem poorly served.
We keep hearing of Hughes patients being told to comeoff warfarin (though not often ten days)> THose doing such telling just do not understand why we take it
In the first instance, and I assume you have Hughes, nobody on warfarin for Hughes should be told to come off warfarin for ten days (or anything longer than a day in my view) The medics should know about coagulation bridging, covering your coagulation needs with something like heparin for those intrusive procedures where bleeds are a possibility.
St Thomas', and no doubt other hospitals, have a protocol for bridging Hughes patients. (I have done it several times on my own at home- with various consultants and my GP's consent- being able to self-test can make it a fairly simple process, you stop warfarin and watch your INR go down, covering with heparin until agreed hours before procedure, have procedure, agree when to restart, restart heparin and warfarin until you are back on track.
The longest I was off warfarin and heparin was 24 hours on one occasion, on another I was back on both within half an hour of the procedure )
I will not contemplate any invasive procedure without agreeing, to my satisfaction, my coagulation bridging procedure. Once explained I seldom have a problem, maybe because I add that I have had triple TIA's on one occasion when my INR was 3.3 - it concentrates their minds on the risks of removing coagulation cover.
That your consultant will not explain his decision to suport self-testing, or listen to any arguments says to me you have the wrong consultant. An easy thing to say, but sounds like you really need someone else.
The last thing I would say is that many procedures that used to require lower or no coagulation, can now be done safely without too much interference with our warfarin regime. e.g. tooth extraction which years ago might involve three days in hospital, can now be done, by confident and competent dentists, with an INR not too far above 3.0
Many thanks for your reply,alot of informatio in it so I certainly feel more informed,and thanks again, I am not going to let it go and your right possibly I have the wrong consultant.
Hi, I am new to this forum so please forgive me If I am going over well trod turf.
When I have invasive hospital procedures I have an ivc filter fitted in addition to the standard anticoag bridging plan. Is this standard with aps or am I very lucky to have a belt and braces haematologist? anne
I am really sad to read such a letter from you in 2015 . Yes you need to find a new Doctor .
I know its very disappointing, its hard to believe the attitude of some medical staff, and I was very diplomatic and willing to come to the warafin clinic monthly or every six weeks ,but that when I was hit with its not up for discussion!
Hi there,
I totally agree with Tim47. I also selftest every second day here in Stockholm. I have all the antibodies (incl Lupus Anticoagulant) and in hight titres.
I have doubletested my CoaguChek XS, a long time and know there is a discrepence between the Machine- value (fingerprick test) and the vein-test at the Laboratory.
Always the same difference. Everyone here in the Stockholm-area use this machine when on warfarin. In the long run they have discovered it will be cheaper. Very few of these people have APS but Roche and my doctor and all doctors stand behind me and it wórks well indeed.
Hope you will look for an APS-doctor who understands how important it is to keep a stable and relatively high value when on APS. My therapeutic value is now an INR between 3.2 - 3.8.
Best wishes from Kerstin in Stockholm
Thanks so muck Kerstin
I was given a coagucheck also by my hematologist. You know your body, you can regulate foods and warfarin Better than anyone else. We are supposed to try to be consistent in what we eat and we know that if levels are too high, we stop warfarin and use food as our medicine.
Barb
Totally agree ,over the years I never had any problems keeping my INR in the rang I was given.Which is all the more frustrating!
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