Sticky Blood-Hughes Syndrome Support
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APS target according to Dr Hughes

My new doc doesn't know APS after all. He has resisting allowing my INR to rise from it's current 2.5. It spiked to 3.3 this week ( I feel better) and he increased my testing from 4 week intervals to 2 weeks! I need a link to somewhere where Dr Hughes discusses optimal levels. TIA.

Danny

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Good to see you on here Danny, I have had that same trouble in the USA. As you know because we both were being seen in Portland OHSU. I insisted my INR needed to be in the 3.5 range in order to feel better, it took sometime and me bringing in information from the forum to help secure their understanding that I'm not being silly that it is real w/Hughes.

Blessings to you Danny, would love to hear from you...message me. Hope all is well

Becca

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Print out and give em :Professor Graham Hughes Monthly Blog-January/February 2017. 😉

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My INR range used to be 2.5-3.5 I asked my consultant to higher it as others had said how much better they felt at higher range.So now at 3-4 range.I honestly don't feel any different. In fact I always think result is going to be low as feel bad but even when at higher end I now don't. At first I did.Professor Hughes said we are not being treated at all when INR is below range so print off info as Wittycjt has said and show your doctor.

Good luck DannyBoy1

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Hi Fra,

Small differences in INR make a lot to clots and symptoms. I think prof Hughes said 3.5 - 4.0. We usually feel best at an INR around 4 but not under an INR of 3.5. Try to be as near 4.0 as you can.

Kerstin

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Thanks Hughes-Comrade. Exactly what i was looking for. Now to see if I can get my Doc to read it.

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I hope this helps you. MaryF

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Is there an updated link for this?

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I don't

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Hughes-Comrade do you have an update to this link?

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Sorry I don't

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Thank you anyway

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My INR 'they' wanted at 2.5 I mentioned Prof Hughes posts 'they' said they'd change it to 3.0 I didn't feel any different until it went upto2.8 but now have had 3 good weeks and I thought I was ok before Still think it should be higher from what you ladies and gents say

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Thanks Guys for doing that for DannyBoy1 Mary and I were a bit busy yesterday but catching up today!

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Hi Danny-Boy,

I would like to go back to your earlier question about "Bullous pemphigoid". I wonder how you managed to get rid of them or do you still have them?

My oncle had it and now I am wondering if I have got it in my mouth. Just one I have.

Kerstin

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Hi all - I have been on here for ages but just a reader as everyone is such a help but here is my question - how is your range diagnosed? I have had APS for 4 years and my range has always been 2-3 but I see how everyone seems to be higher 2.5-3.5. Is there a way to understand what range is best?

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Hi UKWendy and glad to hear from you!

Depends on what symptoms you have first of all. Arterial clots need a higher INR usually than venous clots for ex. Heart-issues usually need a high INR around 4.

Have you been without symptoms lately? Look also at what prof Hughes says about "INR and self-testing".

Kerstin

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