I everyone! It's David from the Negev in Israel. I haven't been to this website yet since the migration from Yahoo Groups, but it looks very nice and organized. "Good job" to whomever built the website!
Today, I need confirmation regarding Hughes Syndrome's duration. Once APLS is triggered or activated by a triggering event, such as being immobilized during a surgery with my feet hanging over the edge of a too short operating table up to my calves, is it true the APL antibodies will remain activated the rest of my life? Will I always be prone to clotting events, organ damage, and all the rest of the symptoms we have? I've tried to find this information online and many articles and studies refer to "trigger events" and "activation" but none actually say, "Yes, you may have unknowingly had APLS your entire life without it ever expressing itself until you experience some triggering event after which your body will always be prone to clotting, stoke, PE, other organ damage, brain fog, memory loss, etc., etc., etc."
Could anyone point me to some documentation regarding the importance of the triggering event and the then permanence of the activated antibodies?
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activefarmer
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Hello there and welcome, I hope you can have a look at some of the papers on the Hughes Syndrome Foundation website, much information there. This may be helpful in answering your questions. An awful lot of people seem to have a trigger and the disease then stays activated, and some people such as my two sisters seem to have been at their worst only when pregnant. I am not sure that it goes away, and the blood tests appear at times to give the wrong information, lots of us on here seronegative. hughes-syndrome.org/ MaryF
I'm pretty sure that I've had Aps all my life, that the Aps antibodies wax and wane, but once a trigger event has happened they stay around and rise and fall.
Still so much to learn with this syndrome, but I have come to the conclusion that we have to work together for awareness, support each other and find ways to live with it until there is a way to stop the antibodies doing damage.
I hope you feeling ok today.
Take care gentle hugs love Sheena xxxxxx
I know what you describe can put you at risk for a clot but I don't know about it activating APS itself. Chances are you already had it and that just led to a clotting event?
APS, it appears, is something you will always have to work with and around.
Can you share some of your story> I would love to hear how its affected you and how you have managed it.
Hi, hope my response here is helpful, and not aggravating. I guess I'm using the scatter gun approach in hopes that something here will be useful:
My understanding is that my immune system made a mistake when it responded to an environmental toxin or infection. In a perfect body, after such toxin or infection was eliminated the body's thymus gland would "run" the antibody against a data base of "self" and would delete any antibody which was cross-reactive with "self." But many of us have errors somewhere in our immune system, and this (these) errors make this check against the data base inaccurate. Which means those of us with autoimmune issues are left with an immune system which attacks our own body.
Some tantalizing clues are trickeling down to us non-medical hoi paloi: associations are made between epstein barr and cytomegalo virus infections and later autoimmune blood diseases. As well as inheriting a tendency to acquire autoimmune diseases, it seems that people are most likely to acquire antibodies within the same antibody "groups" as their relatives: IgG, IgM, IgA,etc, which means autoimmune disease can be grouped into similar "families." One is more likely to acquire additional autoimmune conditions within your Ig "family" grouping.
So my guess (and I'm the English major housewife from West Virginia) is that the position of your calves may have formed a kink in the circulatory system which attracted the antibodies itself, but it may have been an unknown cold or virus from long ago which resulted in your code check "error," and the kick to your immune system from the operation itself put your autoimmune system into high gear and lead to the clot.
Once this who-know-how-long-ago autoimmune error is reenforced then you may indeed have issues from now on. Or not. A lot depends on exactly what lipid membranes your antibodies have coded for, and, random events such as who sneezed what in the aisle ahead of you when you last went grocery shopping.
The immune system acts like a strobe light -- it clicks "on" and "off" again, triggered by daily metabolic cycles. The strobe light metaphor is my way of representing how the immune system looks for "change." When "change" is detected the immune system responds by running its "invader database" (which now includes a mistake.) If a match is made in "invader population" then the appropriate antibodies are manufactured and sent out to do battle.
And at this point in medical science time, there is no knowing exact causes or triggers. I generally avoid as many environmental toxins as a citizen of the 21st Century can and still live inside Western Civilization. I am a fanatic about hand washing. And I try to follow other commonsense rules about good health -- eat right, exercise, etc. And I hold my breath when walking by my fellow citizens puffing happily away beside those "no smoking" signs beside entrances to buildings.
On a personal note, which may or may not be relevant, I found that the bloating and gas which I have had for years and which I never talked to my doc about (why bring up gas when you need to get opinions about blood thinners and strokes?) -- was Celiac (another autoimmune disease wherein the patient has a "leaky gut" and is allergic to gluten -- protein from wheat, rye and barley.) It is my fervent hope that discovering and eliminating this daily "kick" to my immune system will mean no more autoimmune issues in the future (beyond that which I have.)
But then I found out that the debilitating hip pain I have had for 18 months was actually the APS -- those clever antibodies found something they fervently believed they had to chew on on my spine!
So, what got them to do that? Was it something I said? That rude biker dude who coughed on me 2 summers ago? That perfume I was forced to smell when the lady came up to my unexpectedly in the mall and said "Try our new perfume?"
So -- , swallowing more warfarin and shouldering on now.
I like the analogies hon, I wondering now about the busy little antibodies and whether they're busy chewin on my lungs and spine too. Bless em!!! Nasty little critters!!!
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EULAR Treatment Recommendations for the Blood Clotting Disorder APS
Promising Appt w/GP
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