Question : Has anyone out there having... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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jetjetjet profile image
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Has anyone out there having APS and also diabetes having INR bottoming out and taking the sugar count down with the INR . I have been battling this for weeks now - INR won't go up even thought jantoven increased 4.0 grams twice{ I test every 3 days} not that we change every three days BUT we have had to last week because i dropped so low and if i drop .1 more - I will have to start 120 ml Enox for a week or til i come up form 2.1 to at least 3.0. so i was wondering a friend said i should put this out here . And if anyone else has or had this issue . let me know how it was finally fixed or what happened .

Thanks C & J

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jetjetjet
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rach1081985 profile image
rach1081985

I have diabetes and could never stable inr on warfarin I currently take rivaroxaban as warfrin did not work 4 me

jetjetjet profile image
jetjetjet in reply to rach1081985

Yes i can't take any of them other oral Anticoagulants .Warfarin Sulfate is it because it is the only thing strong enough and I normally don't have to-many issues accept the erratic INR and I have asked about using Enox along with the Jantoven BUT hemo said not a good idea with me .?? She is a hard one for change -GOD rach it took me 2 or 3 years to-get her to go along with my INR range of 2.5 to 3.5 --- it was a battle , I won BUT is took that long bringing her info - some people's info from here and the Doc from Australia about the Erratic and Unstable INR .All of the things he listed for what is wrong to have and try to stabilize and INR - i had everyone of them -Kinda the poster child. thanks Rach.

rach1081985 profile image
rach1081985 in reply to jetjetjet

Oh dear thst sounds hard work Dam doctors

MaryF profile image
MaryFAdministrator

HI, I don't have Diabetes, however my father did at the end of his life as well as Hughes Syndrome/APS, and my daughter also has PCOS, which can lead to Diabetes, we all follow a low G.I diet to make sure that sugar is not an issue which leads to problems managing insulin levels, however if you plan any changes of course, do check in with your GP. MaryF

jetjetjet profile image
jetjetjet in reply to MaryF

Thanks M I don't us insulin - and my diet has been cut to where they at Doc's offices what can't I eat .with te sugar and the APS . SO i tell them let me list the things I CAN eat -the list is much smaller !! ha .My numbers run good TILL my INR drops and won't go up and it's then my sugar daily strip tests jump by 40 .and i have noticed this before ?I am usually low Pre -Diabetes class 100 to maybe 110 but 157 area is way high for me . we haven't been able to get my INR up even though we have been pushing it up every time i test { though normally we don't raise it much at all }. I was wondering if anyone else may have noticed this issue with them .BUT taking into consideration my many issues it could be the result of another issue ?? And my Anticoagulant nurse left and i am starting with a new one and i think she is a bit uneasy dealing with my issues along with my very erratic INR'S .She asks me what we should do and i am well versed in how my wacky body acts.But it is nice that she asks - i have asked for a face to face meeting with her to go over my charts and past history and as of yet she hasn't done that . WEll keep on keeping on I guess.

KellyInTexas profile image
KellyInTexasAdministrator

Sorry Jet, I’m clueless... what a difficult position to be in. I’m very sorry, and wish you great expediency and success in resolving this issue.

Please get that INR up soon- and increase your fluids in the meantime...

jetjetjet profile image
jetjetjet

Thanks Kel - it is coming up as of late yesterday { 3.5 } when INR came in and my morning glucose fasting is coming down - so as i was mentioning I think it is connected BUT no one doctor is going to say " YES " it is . I have seen this before but now the focus on these two things being connected I will watch .I was bruising bad and swelling at the draw sites , of which i hardly ever did , just another piece of this puzzle.When having my blood drawn i had the most experienced gals draw, some I have been seeing twice a week for the last 8 of my 10 years with this mess. So I have been drinking all my everyday fluids and then some [ if i drink any more i'll turn into a fish !! } . My veins have been OK no rolling or flattening say's Sheena , my most resent experienced gal phlebotomist . She is just having that confused look on her face as I .we kept my Jantoven up 3 grams to see if it will inch up more or level off would make me smile . so long as it doesn't start to drop again with the Jantoven dosage . I am surprised no one else has had this , we must have people with these two things .?? Or was i dropped from a space ship ?? Well Friday will tell. I have new Nurses at Anticoagulant clinic { only a month since Laurel left me } So the one nurse i started with is on vacation Ha ha .CRAZY MESS IT IS. HUGS AL . C&J

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