Sticky Blood-Hughes Syndrome Support
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To Hughes or not to Hughes

Well, just been to see a Rheumtologist for the first time today. Didn't prepare for it by writing a history or anything - I know this is going against all the advise on this site but I have been to too many consultants who are not in the least bit interested in anything I have to say and I really had no idea what she would want to ask. I had only one agenda and that was to get my INR target raised from 2.5 - so I was armed with relevant medical journal articles just in case and had letters etc from previous hospital visits, in case they had lost my notes again, and that was it. I was pleasantly surprised - guess that is the difference between surgical type consultants to whom you are just an organ on legs and medial consultants - she actually listened to what I said and took on board all of my concerns. She also agreed that my INR target should go up without me needing to resort to waving any medial journals at her!! One thing though - technically I have not be properly diagnosed with APS yet as they haven't done the tests twice, so perhaps I might be never know

5 Replies

Great news so glad you had a positive experience and got the result you wanted.The right INR should make a big difference in your symptoms.All the best Ann


Thanks Ann!


Hi -Elaine--great news ,it's sounds like you found a KEEPER-- it's good to know that there are dc.s out there that understand our plight'sit's also good that you were prepared-what did she bring your INR target range up to.and are they going to contiue with the 2 nd tests. it would be an awsome thing to rid yourself of the hughes -who knows maybe you never were full blown aps. that would be a good thing. glad to hear your super news and let us know how it all pans out- your cheeering person _____ impressed jet-------flipper


Hi Jet

Thanks for this - she has raised my INR to 3-3.5 range from 2.5 so hopefully that will help with memory etc and protect against future strokes and/or other clots! She is still doing the other tests plus some for lupus (including a lung CT) but I think she is fairly confident that I have APS but probably don't have Lupus - do hope she is right about the Lupus!



Sounding good so far, good for you. Mary F x


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