Sticky Blood-Hughes Syndrome Support
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St T's are suggesting a new drug plan to my specialist up here in Staffordshire. I will see my local consultant tomorrow. They are suggesting an INR of 3-4 (was 3.5 to 5) and continuing warfarin. Then if I go below 3 clexane jabs. My INR is fairly erratic.

They also are suggesting plaquenil for the pain and for its mild anticogualant effects and also for the lupus type symptoms I have (they are retesting for lupus as I am a weak positive).

Still new to all this. Your thoughts would be appreciated :) I think I want to know as much as poss before tomorrow's appointment.


4 Replies

Hi Lynn

The INR range seems a bit wide, I used to try to keep around 4.0, as below 3.3 I used to get bad symptoms and so I did Fragmin shots until my INR was back in range.

Best wishes.

Dave x


INR of 5 would make me feel a bit light headed, but St Thomas's are the people who are best to advise.

Clexane under 3 seems a really good idea to me, everyone is different though. warfarin and Clexane work in different ways.


Hi I have been on Plaquenil for the last 18 months, it helps my joint pain no end and i am on warfarin, have been for 18 years 3 - 4.5 INR, I have Hughes Syndrome but not Lupus Yet!! I had a test done on the 10th Oct but heard nothing (no news is good news) the only thing i was told with Plaquenil was to have an eye test every 12 month because it can cause staining!! behind the eyes but my specialist says it a really good drug. good luck x


Thanks all, My consultant up here decided today to wait to start the plaquenil until after we have seen how the the b12 helps and also what the test results from London show. I see him again in Jan unless anything untoward crops up. I was worried that London my "de-diagnose" me if no antibodies show but the consultant reassured me that my Hughes diagnosis will remain regardless one because the antibody count was so high but also because he respects that some patients are sero negative anyway. I was hugely relieved about the diagnosis staying as I was so worried I would be back to square one.



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