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Sticky Blood-Hughes Syndrome Support
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Just an update .... from little old NZ

I have been back to the specialist, blood results have also confirmed Lupus Anticoagulation. Finally started on Warfarin on Tuesday. 3mg with weekly blood tests until INR is stable between 2-3. He has also put me on Prednisone daily ... I haven't started to taking these as I feel that I am just putting so much into my body without adding a steroid to the mix. Currently taking 9 tablets a day! I feel like I am someone in my 70s having to take all these pills, not 29 yrs old ! But I do feel better, so that is the main thing!

A lot to get my head around, but I am getting there. And this site is just amazing, learning so much.

Hope you all have a nice weekend


3 Replies

I am delighted to hear great news from so far away, regarding progress with medication, diagnosis etc, and thank you for the great feedback. Have they also given you Plaquenil? Although slow to work over many weeks and months.. for some people it literally is life changing with the fatigue! Mary F x


Glad to hear your feeling better . It should improve further too. All the best Ann


Know that if you start the prednisone you are then committed to take the whole dose, as prescribed. I point this out because I recently butted into an overheard conversation at a shop when the clerk was recounting adrenal failure which she attributed to her doc prescribing a useless med, so she stopped taking it, got sicker and was rushed to the ER. She did not tell the admitting hospital anything about her GP or what she was being treated for the previous week , because, " you know, they just cover up for each other so I wasn't going to let the ER docs know anything so I could get their honest opinion and not just a regurgitation of my incompetent GP!"

As I said, I butted in and told her the abrupt cessation of her steroid regimen most likely caused the adrenal failure. " is that why they kept asking about any meds, legal or otherwise, I may have taken that week? I thought they just wanted to make sure they weren't going to contradict my GP in case I might be planning to sue him. You know these doctors stick together and you can't trust them!"

Forgive me if you already know this. I, the doctor's daughter, was obviously severely shocked by the level of paranoia and willful ugnorance coming from this clerk. So now I guess I'm on a mission to tell all and sundry who may need to know about oral steroid protocol.


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