Sticky Blood-Hughes Syndrome Support
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Are There Any Standard APS Assessment Protocols?

Hey all, I wanted to know if there are any standard APS assessment protocols in place at the moment for the treatment of those who already have APS. Let me be clear, I don't mean diagnosis of the disease itself. I mean assessment of patients who are having problems or some sort of major (or minor) flare up.

I am asking because I am in the middle of a flare up and it would be nice if there was a standard protocol that could be implemented by a doctor or a hospital to make sure that "all systems are OK." APS affects so many organs, systems and functions in the body. So I just feel that there should be some standardized set of tests or actions that a doctor could tick off on a checklist in order to determine if a patient is essentially OK or if they need to have further treatment other than just the regular adjustment of meds.

Ideally I would hope it would be a set of well-defined critical tests that could save lives. Because if anyone else is like me, I spend hours and days and weeks at hospitals, being given every single test each specialist can think of to give me. That gets darn expensive, and at some point, it probably leads doctors down the wrong road in terms of assessment and treatment. I would like to have something called the "APS Flare Protocol" (or something like that), that would be a more efficient and productive way of helping us when things go wrong.


3 Replies

What you are wanting would be next to impossible from a medical standpoint for the very reasons you mention- that APS can affect so many systems, organs and every little nook and cranny in our bodies (including things we didn't know we have!).

Energency medicine looks to find a cause for the cheif complaint (reason or reasons patient came to the Emergency Room) and tries to rule out what they can and/or rule in causes. Most of the time all that happens is the bad stuff is ruled out by lab tests and other diagnostic tests. Basically what is normal tells us that it can't be this or that or most of the real bad stuff.... As tests come back a normal could mean to look elsewhere and an abnormal to check yet something else. This goes back and forth for a time until MD is confident about diagnosis or lack of a life threatening issue.

Sadly hematology and rheumatology are a bit of the same in a way. Its a big guessing game. With so many systems that can be affected with APS really the only thing to do is start with whats not going so right and work from there.... Because of the nature of APS the docs may test for a myriad of other things.

Some things you really only ever need to be tested for once in a lifetime (such as genetic stuff, etc) so maybe there is a way to keep these tests handy or readily availabe for those docs so they don't get needlessly repeated?

Just got off a 12 hr shift and very tired so I hope this all makes sense and I am sure others will add to this.....



I appreciate where you coming from but as kristina says, would be impossible as yet, probably ever as we are all so different. Diagnosis is so difficult. Critical care of aps patients has to be tailored to individual. Some of us have multiple dx too.

In an ideal world aps would fit. But its far from ideal.

Its down to us to get info to med teams if they don't know. Raising awareness and education seems to be the path we must walk.

Not feeling well, so sorry if this doesn't make sense!!

Hope you well today.

Take care gentle hugs sheena xxxxx jessielou xxx :-) :-) :-)


Hi TheKid,

Welcome to the group

I also see what you are saying and as kristina said This is an impossible question to answer as have said above diagnosis is so difficult.and treatment is tailored to individuals to based on what you have.

Sorry to sound like an echo but It is down to us to get informention, raising awareness and education.

You may also want to speak to Kate at the Hughes Foundation as there maybe some information we as patients do not know about but i highly doubt it.

I am sorry its not been very helpful. there is a blog on here which talks about symptoms you may want to have a look at that at least you would have an idea whatother people have for you to look out for.

if you want any more help please join ask



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