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Hughes Syndrome APS Forum

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Well here I am...

ZRHONDA profile image
4 Replies

I am stll in the hospital, but now I'm in a nursing home. I will go to assisted living on 3/23. Ththey got all freaked out because my PT/IN was 5.8 They held my dose of warfarin and wanted to give me Vitamin K I refused the Vitamin K and they sat me down to tell how dangerous my coition was. They said it was critical. I told them I felt great and that if they educated themselves about APS they would know that I need higher level. Today it was 4.2 and they were still pushing the Vitamin K. Now they are with holding it altogether until I'm between 2.3. I actually have some 5 mg tablets in my bag. What is your opinion, should I take a 5mg a day or let it drop and suffer headaches again. I wish my regular doctor was seeing me but I'm stuck here with their docs until the 23rd. Any pearls of wisdom?

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ZRHONDA
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4 Replies
Ozchick profile image
Ozchick

AArgh! Makes you want to spit chips when they don't listen!! At least you refused the VitK but what was your 'normal' INR when you felt good? Can you get your previous medical records sent over to your new home? The trouble with self medicating is knowing how much. Maybe you need to show them some of the info on the Hughes site or one of Prof Hughes enlightening youtube videos to let them know you have managed this before.

I'm guessing the ZR is longer a mode of transport? :)

ZRHONDA profile image
ZRHONDA in reply to Ozchick

They want me between 2nd 4. My primary doctor is well educated in APS and usually keeps it in high 3s. I felt really great at 4.2. But it all just falls on deaf ears. I can't wait to get to my new place and have my house call doc back. When I start getting headache I know my level is too low. And it's because of the wonderful people on this forum. I have learned so much ere and I am so grateful for each and every one of you.

MaryF profile image
MaryFAdministrator

HI, you are in a tricky position, not a good idea to self medicate, however education is key if you possibly can. medscape.com/viewarticle/71...

MaryF

Manofmendip profile image
Manofmendip

As my colleague, Mary, says you are in a tricky situation.

We are not medical professionals on here, so we cannot advise you about dosing.

When I was on Warfarin I needed an INR of around 4.0 to feel well and, even then, I had clotting incidents. You could tell them that unless they educate themselves on the INR requirements for APS patients and treat you appropriately you consider them to be negligent and will hold them responsible if you suffer clotting or other issues, relating to APS, because of their refusal to treat you appropriately to your needs and established good practice in treating APS.

Dave

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