Sticky Blood-Hughes Syndrome Support
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Do people often have to receive blood transfusions?

It is my husband who is afflicted with Hughes/APS. He seems to be getting progressively weaker, and requiring more transfusions. Though I am an R.N - the information is still not out there. His hematologist lets his Hgb drop to 8.5 before they transfuse him, and it seems to help for a few days, then he gets weak again. The procrit injections - 60,000 units each time don't seem to be helping at all. Thanks in advance for your help.

7 Replies

Hi milliken

welcome to the site, glad you found us, sorry to hear that your husband having such an awful time.

Im sorry i not able to answer your question, but hopefully someone else will be able to help you.

Hope we can help with, support, info etc.

I not very with it tonight so i apologise.

I hope hubby not feelin to bad today.

Take care, gentle hugs to you both, jessielou (Sheena) xxxxxxxx :-) :-) :-)



Thanks for the welcome, and I hope you get to feeling better soon. Hazel was a dear and sent me here. I used to be more active on her site, and should get there again, but like most of us, I have had my hands full with him and other family issues.

No need to apologize - feeling bad is reason enough. On top of all this - he seems to have developed a chest cold, and his Vasculitis is acting up and causing him pain.

Take care of yourself, and thanks again.

milliken2 (Beth)


Hi Milliken,

Sorry took so long to get back to you, hope hubby is feeling better. I can imagine your hands are full, I know my partner has to do so much, that i can no longer do.

Hazel so supportive and knowledgeable, she`s good to have in your corner.

Hope we can still help in some small way, just here if you need a rant, moan, whatever.

Take care gentle hugs Jessielou xxxxxx (Sheena) xxxx :-) :-)


Sorry Beth but I can't really help you as blood transfusions are not part of the 'normal' treatment for APS. I know there is autoimmune hemolyptic anemia which causes the Hgb to drop but I think you'd be better off asking a haematologist. Have you tried Lifeblood? They specialise in all blood disorders and might be able to shed more light on the problem.

Hope your husband starts to rally soon, it must be a terrible worry for you.



Thanks for the information. No - I haven't tried Lifeblood yet - but will go there after I finish this post. He is on Arixtra injections for the Hughes/APS - and I thought they had been working well. Has been on those for 5 years - he had been on Coumadin years ago - for 10 year or so - and ended up having 3 blood clots in his left leg. They tried Lovenox, but he was allergic to that - so they put him on the Arixtra. He was first put on the Coumadin when he had the clot in his Superior Mesenteric Artery which feeds the bowel - and had 13 1/2 inches of gang grene intestine which they removed in emergency surgery. But, at that time - 14 years or so ago - they never tested him for the APS. It wasn't until we went to Pittsburgh to the Hematologist there that they even tested him. The Hema thinks his vasculitis is causing this problem - so we do have an appointment with the rheumy shortly. I sure do hope it get corrected - as it is hard to see him so weak. Again, thank you.



As Kate points out transfusions are not a usual treatment for APLS/Hughes syndrome, I have had them for other reasons and you do have to be careful with them because even with careful screening of the blood, the blood you receive can contain more clotting factors or unknown substances than we would like so there can be dangers, from getting a clot after having the transfusion.

Also you really need to get on top of why he is losing so much in the first place, is he not able to make his own blood or is he bleeding somewhere. Have they ruled out internal bleeding from the GI tract or bowel?

Hope he improves soon and tell him Hello from all of us in the group.



He has had MRI's and CAT scans - and neither show any frank bleeding elsewhere. But - what I am more concerne about is a possibility of some sort of Leukemia. He has a family hx of CA - but not leukemia. He is not willing to get another bone marrow biopsy - at least not yet, as the last one they did - he did not have any anesthesia - did it right in his hospital bed - without me being there - or I would have stopped them and made them give him anesthesia. It caused him severe pain - and as he puts it - he was like a cat clining to the ceiling with all of his claws out. And he had pain for months afterwards at the site. But, something has to be figured out. He did have his 2 pint transfusion over the weekend - and is somewhat better - but not right. Thanks for your concern, and I will pass along the hello.



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