Sticky Blood-Hughes Syndrome Support
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Immunologist - What are the benefits of seeing one? 14 year old son has been diagoned with APS.  We are working with a pediatric hematologist for medications, blood work, etc.  He would like us to to see an immunologist as wesll since his cardioliopin IGG and Beta-2 IGG are so high.  His last test result for the cardiolipin igg was 73.9 GPL U/ml...normal range is 0-10, and his Beta-2 Glycoprotein IGG was 65 SGU..normal range is 0-20. Has anyone had success with seeing an immunologist to get these numbers back into somewhat of a normal range? 

7 Replies

I will try to say something about your question but I am not medical trained but have APS myself. 

I have all the three different antibodies in high levels since 2002. I have not heard of reducing the antibodies unless you are going to do a severy heart-operation and something like that. Or perhaps when you have got CAPS.

I have not heard of anyone seeing that sort of doctor when we have APS but I am convinced that we need an APS-Specialist who knows what different symptoms to look for. That type of Doctor knows what drugs he need for anticoagulation and also know other "cousins" to APS like SLE, Sjögrens, Thyroidillnesses etc.

I have several Specialists but usually see a Hematologist for my blood and a Rheumatoligist for treatment twice a year here in Stockholm.

Good Luck from Kerstin in Stockholm 


Thank you!


HI, the main thing is to see somebody who understands the condition fully.  I enclose this, some useful names on here, also others in the USA can advise re their personal experience:

People will tell you which state they are in and who they see, normally happens on here, best of luck to you and your son.    MaryF


Thank you!!


In direct answer to your question....if the Immunologist has good experience in treating APS/Hughes Syndrome then of course he/she would be a good referral. However if he/she has never treated anyone with that condition before then...well.. you get where Im going with this! Prof Shoenfeld in Israel is an Immunologist, probably the best in the world and knows an awful lot about APS, so Id be very happy to see him! So its horses for courses.


I would say, it's a good idea.  I am under one.  It's good.  


The most important is that he sees an Expert of APS as the Administrators  Mary and APsnotFab are saying.  Very important for us.

I do not think at all of my high antibodies and my doctors do not talk about them either. I feel fine when I am properly anticoagulated. My Specialist wants me on a steady level. I selftest with an INR of 3.2 - 3.8.

Kerstin in Stockholm


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