Sticky Blood-Hughes Syndrome Support
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I’m seeing posts on here that people are stating they have had lesions/clots found in body’s organ and are put on warf then disappear? You?

Then when rechecked 6-12 months later, clot is gone... am I understanding this correctly? Thanks, Cindy

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Well I was diagnosed 2015 and have had about 3-4 MRI locally and told nothing on them then last one ordered by Guys and large ones on and I am on warfarin. Me myself just think mine have been there all time but not told of.Prof at Guys said you need to know what you are looking for ?

So no improvement for me on warfarin Wittycjt

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If you get anticoagulation which is put at a steady and INR high enough that will help you to avoid further clots (even micro-clots). Most of us have difficulties to keep the INR steady all the time and high enough. Doctors do not understand how important it is for us with our very thick blood to be properly anticoagulated.

These are difficult questions that should be answered by a Specialist.

Kerstin in Stockholm

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Fra22-57,

You should be well anticoagulated. How is it going with your CoaguChek XS-machine? There is no real improvement when the INR is too low or unsteady.

Have they suggested LMW Heparin (Fragmin) for you instead of Warfarin?

Kerstin in Stockholm

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Still waiting about self testing.was 2.7 last week n 3.4 this.I am up and down.coagulation department has kept me at 8mg each day but 9mg Mon. Have been mostly 8's and 2x7's.

Have to stay warfarin only Kerstin

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I am sorry but you are not properly anticoagulated. If you are too low in INR (what is your actual therapeutic range?) you should have a Fragminshot to take. Why do you not have that? You are seeing good APS-Specialists at Guys?

Why do you not get selftesting as they say no to LMW Heparin (Fragmin)? What are they waiting for????

Kerstin

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My range is 3-4

Guys say heparin shot if under 2.he has sent clinic letter to my rheumatologist and GP stating that.goodness knows why not under 3.Guys can't prescribe only inform my rheumatologist. Self testing still waiting.

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As your range is 3.0 - 4.0 it should of course be under 3.0. Talk to the Doctor who is to blame for it. I think you said that you should see your Rheumatologist middle January or have I dreamt that?

Kerstin

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For me warfarin was a life saver. Started the meds and those”panic atacks” and migranes? Gone. Caput. No more One hematologist who consulted with me prior to my hip replacement wanted me off warfarin as my blood values currently are “boring” with respect to APLS (and due to trasfer from paper to electronic data as well as doctors moving from one practice to another) those positive numbers from 2000-2001 have been lost.) And I did try lowering my INR. I actually made it down to an INR of 1.7 before I had another “panic attack” which I now know is a TIA.

I then increased my warfarin dosage back up to an INR of 2.25-2.5, which is low but seems to work for me. I do attribute my now “boring” antibody numbers to my gluten free diet. The more I read about how gluten is (or more acturately, is NOT) digested in the gut) the more I think it is factor in a lot of chronic ailments.

But as is reapeated often here: “we’re all different.” The blood coagulation cascade is very, very complicated. So again, this is why we all need to consult with a doctor who is expereinced in treating APS.

Gina

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Think my post has been hijacked

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in 'normal' people, treatment with warfarin will stop further clotting and then takes around the six months to resolve the clot. (the body will resorb the clot and can even build veins around it) eg. DVT after long flights or periods of immobility, which cause the blood to pool and clot. I do still have residual damage in my lungs from the PE's I had nearly 6 years ago and before I was on permanent anticoags and started on the long and crazy diagnosis to Hughes.

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Thank you for answering my post😁

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Sometimes threads go off track here! I have had a clot in my spleen in the past-on Clexane that went away eventually so I'm still keeping my fingers crossed that the Rivaroxaban keeps working! There's not much else left in the Pharmacy drawer!! Saw my Rheumy today and he's happy enough but has referred me for a CT to check out lungs as apparently there could be a bit of interstitial lung disease and he just wanted to rule it out.

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I have just prayed for you, hopefully all will be okay. I guess you are liking the riva good that you can have it! May all be well, Cindy

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Thank you!

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Do they have a blood test to check that riva is working. I know on my lovenox I had a blood test to see if my range was/is okay, do they have something like this for the riva?

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I have never had one (bit of a leap of faith there) but there are antidotes now. I certainly don't have crazy bleeds like when INR jumped up to 7's and 8's. I looked like a Zombie sometimes after working in the garden and getting scratched without realising!!

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I understand, good luck !

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They found a few lesions in my right brain 5 years ago MRI, has not changed or got more for the past 5 years which is a blessing to me already, but those lesion hasn't gone away though; just need to make sure properly anti coagulated and inflammation under control

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