Sticky Blood-Hughes Syndrome Support

Is Our Blood Always Sticky, or Just Periodically Sticky?

This is a follow up to my last question regarding why APS sufferers feel better when our INR goes higher. It was established in the answers to my question that our blood is, indeed, "sticky" when our INRs dip too low. This causes all our symptoms and can lead to truly life-threatening outcomes such as strokes, heart attacks, etc.

So it would seem important, then, to know if our blood, in the absence of anticoagulation therapy, is ALWAYS sticky or just SOMETIMES sticky.

I am no immunologist, but what I understand of immune responses is that they are reactions to the presence of a specific pathogen. For example, you get this year's flu shot. Should you be exposed to the flu virus, the antibodies you've created tag the virus and it is then destroyed. In the absence of exposure to the flu, those antibodies play no role -- they just hang out in the blood stream or go wherever antibodies go when they aren't needed.

If we apply the same logic to APS, sufferers should have persistent, chronic sticky blood in the absence of anticoagulation therapy. Why? Because the "pathogens" are always present -- i.e. phospholipids. Our phospholipids are ALWAYS present, they don't go on vacation. Therefore, the antibodies we have created against phospholipids should ALWAYS be attacking.

Where things seem to get interesting, is when we consider that APS, at least anecdotally speaking, tends to "flare." We have bouts with this disease that are sometimes worse than others. And for those who experienced these bouts BEFORE diagnosis and the start of anticoagulation therapy, it would seem that they were not consistently feeling unwell or consistently throwing clots (I assume). And in terms of onset of the disease, we read that a person may have headaches/migraines in their teens that go away in their 20s and return in their 30s.

This on-again/off-again behavior of the disease, does not make sense to me from an immunological perspective. Phospholipids were present in our bodies in our teens, 20s, 30s, 40s, etc. So why the disappearance of a symptom or a lack or absence of DVTs??

And if they disease is episodic and not always chronic and persistent, then that means there are OTHER confounding and underlying triggers that can and should be identified and addressed. In fact, it might actually mean that a cure is more plausible than previously thought.

Because if there is an additional trigger(s) that MUST be present in order for the anti-bodies to spring into action and cause us all these problems, then it would be possible to treat that trigger(s).

I know I'm just an amateur, but does any of this make sense to anyone?

5 Replies

Ahh therein lies the question that has mystified those studying autoimmune diseases! How and what causes a flare and/or remission? Funding willing I am sure that work has been going on and will continue to go on looking at the very thing you speak of, it makes perfect sense to find the "off" switch for this and every other autoimmune disease.


Sharon x


Very interesting... this was on last night. On Channel 4

Mary F x


Thanks Mary - just can't get the bloomin 4OD to work!!


hi kid im not quite sure just where you are getting your info from, or perhaps your own feelings,symtoms etc . it is my own expreince that i can be all over the place with my inr, have very different symtoms than others, some pertain to some glad that you are very agressive with your condition,as are we all, i think you should stand back , listen and learn. this problem we have knows no bounderies, there is no set rules, no set symtoms , no magic wand . im am not trying to be negative, just a realist. the better you can understand just what is happening to you with your symtoms , feelings ,pains etc. you i think will be more comfortable with in your self if you try to ,not try to jump to conclusions. to se just what is there or not , i know from my own past that i did the same thing and it about drove me crazy. take your time be well jet


I'm a newbie with this - waiting for my second bloodtest to diagnose condition - what I don't understand is that in 2005 my bloods tested negative - this new reading has y just shown up - but surely it wd have shown in 2005 - presumably once the antibodies are there they're always there - even if symptoms waxing and waning? Expecting this recent test to be a false positive?


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