Advice please

[Hedwig-68]

I'm new to this blog, the reason why I looked up my blood disorders is that I am feeling lately extremely tired and my INR is being checked twice a week in the hospital. It is either too high or too low. Yesterday the hospital called and it was 6.9 and on Friday it was 1.7. My range should be 3 to 3.5. Very annoying to have to drive to hospital. They think it is stress......husband quintuple bypass last year and both our sons live abroad! Is anyone out there having similar symptoms and as anyone the same blood disorder combination? Lupus inhibitor.....Leiden V factor and S.Def? Would be very grateful for any information.

[Manofmendip]

Hello

I agree with what my colleague has told you and her question about Lupus Inhibitor.

Dave

[Hedwig-68 in reply to Manofmendip]

I was diagnosed in 1995 with the three disorders one of which was lupus inhibitor but just checked with my GP and they also call it LA. Thank you for your reply much appreciated

[tim47 in reply to Hedwig-68]

LA, stands for Lupus Anticoagulant which as APsnotFAB states is an unhelpful label. I knew my condition by that name for fifteen years or so before Prof Hughes pulled it all together and our condition became known as Hughes Syndrome or Antiphospholipid Syndrome (APS) . Tiredness is I am afraid a terribly common feature in APS though you have been given some ideas above for managing it better. Many people simply fail to understand just how whacked we can feel at times and you might like to google 'Spoon theory' which a Lupus sufferer came up with to explain how we can be affected. I now say to some people, look up spoon theory and you may understand why I may not be able to do this that or the other! Saves lots of repeating oneself!

[jetjetjet]

I have a very erratic INR they are testing me 3 times a week -- we don't change my warfarin scedule every time because of the warfarin 3 day 1/2 life -- we test to make sure i am not plummeting or sky rocketing out of site as i can be a 2.4 on Tuesday and a 9.1 on Thurs. . I have never been stable in my life or should I say since Sept 1 2009 .I never go more than a week with out a blood draw for the INR and i am L A positive so in my case and also because of other factors I can't finger test when we tried it it was so far off it was ridiculous. hope this is of help and my range is 2.5 to 3.5. and that should be higher like 3.5 to 4.5 but my new DC . isn't to keen on raising it up .

[Lure2 in reply to jetjetjet]

Hi Jet,

2.5 in INR is quite too low for us! Talk to him. You should have 3.2 - 3.8 like me perhaps.

Kerstin

[Lure2 in reply to jetjetjet]

Sorry Jim,

Stupid of me to say (3.2 - 3.8) as I understand how difficult it is for you to be in range.

Kerstin

[rlupus in reply to jetjetjet]

Hi JETJETJET,

I finaly feel not alone as this happens to me all the time i am tested twice a week for life,i tried self test and as you say INR all over the place drives me mad i do no when its high though as i become very ill,

Take care

[Hughes-Comrade in reply to jetjetjet]

Jet- With that much difficulty it would seem fair to start a trial of Fragmin injections to see if you become more stable?

[jetjetjet in reply to Hughes-Comrade]

That along with the Enoxaparin were ruled out as not enough to keep me safe with all my medical problems . I do use Enox as a bridging agent. but can't stay on it . Fragmin and Tinzaparin are available here in the states but again are considered a secondary treatment.

[MaryF Administrator]

Hi there, you do indeed have Hughes Syndrome/APS otherwise known as Sticky Blood or Antiphospholipid Syndrome. The INR can fluctuate for any number of reasons, if the diet is not consistent, other medications, viruses, supplements etc, sometimes the importance of diet is not explained when on Warfarin. MaryF

[Hedwig-68]

So kind of you to take the time to reply to my questions.i live in Surrey Dorking area. Thank you again really appreciate your time. Kind regards Hedwig