My son's Pediatric hematologist is suggesting I be tested for Lupus Anticoagulant since my INR is so labile ( unstable) . I explained to him that I really couldn't test for this one since I'm on Coumadin. He told me the CIC was a " back door" way to test. My son ( just turned 16 last weekend , and was diagnosed with APS recently.)
Has anyone had positive experiences with this? Knowledge?
( obviously I have my own adult heme. I'm aCL positive and B2GP1 positive, but was negative for LA at time of intital testings- then clotted immediately and started on warfarin.)
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KellyInTexas
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If you are aCL positive and B2GP1 positive and have had two such positive results twelve weeks apart then that would mean that you have APS, you don't need to test positive for LA as well.
I've just read back over your posts and you have a diagnosis of APS, I'm not sure why your son's Haematologist is suggesting that you should be tested for LA too. Have they said why?
Sorry I'm not being clear. We are trying to figure out why my INR is hard to stabilize. I do have APS, as you will be able to determine if you read my initial profile.
We are wondering if I've " picked up" LA along the way, but I've been under the impression that there is no way to test for it now that I'm on warfarin. My sons pedi heme, ( now my son has also been diagnosed with APS, gee thanks a lot for the stellar Genetics, mom😘) is suggesting that there is an alternative way to test for the LA antibody if you are on warfarin, and that is with this CIC. I'm surprised that I've never heard of it. I see my regular adult heme on Monday, and I'm going to ask him about this, but would like to know more about this from all of you.
No, we are trying to determine if I've picked up the lupus antibody Anticoagulant. We are trying to stabilize my INR became it's too unstable and I'm very sensitive to re clotting . If I drop fellow 3.5 I'm making new DVT's within two days. Even I go back up in two days.
Kersten ( lure 2from Sweden) keeps asking so I know it is very important. It makes the INR much harder to control. I'm very steady on greens. I switched to exclusive LMWH daily injections but got almost daily migraines and reclotted with a DVT despite xa factor being in range- in fact, in the high normal range. It just didn't suit me.
I'm trying to figure out do I need to literally weigh each leaf of spinach ? I eat " about the same amount of greens. And the greens which contain the same value of vit K."
It seems the educated balance, relaxed and very reasonable approach to all this is simply not working with regards to stabilizing my INR .
It would be nice to understand why this is happening, or figure out if there is something I'm doing somewhere wrong I'm missing diet wise. Medicine wise, ??? It's dangerous for me. I keep clotting.
I've never heard of an alternative way to reliably test for LA whilst on warfarin. I am only positive for LA and not the other two. For this reason my doctor told me just last week they won't bother testing me again as it's not accurate (I've had two positive tests anyway).
And, yes, due to being LA positive my INR is very unstable.
Yes, that's what I've always though. Surely I would have heard of an alternative testing method. ( even though he did say it was a " back door approach it." ) I'm sure it's just not as reliable.
Grant's ( our son) pedi heme is very good- very knowledgeable. I think he's better than mine.
To be clear, there is no question as to whether or not I have APS. I DO have APS. In fact, my antibodies for aCL and B2GP1 are back up again.
I am trying to figure out if I am now LA positive also. As in for that third anti body, not the alternative term for our disease, like APLS, etc. which can also be confusing, like Dave states. This is true, it can be a source of confusion.
And yes, my son was confirmed with APS last week. He just had his 16th birthday last week.
The whole auto immune/antibody mechanism in the body is still only partially understand. Just in the past few years a lot of progress has been made finding associations that traditional medicine and doctors could never have imagined before. And that is: associations between the gut biome, a diet that we always presumed was healthy, stray random viral infections that most of us recover from quite quickly, and -( wait for it, cue the drum roll) - autoimmune conditions.
A lot of doctors are very resistant to this new paradigm which connects lifestyle, diet, and the development of chronic diseases. they want to go back in or stay in the world of find one problem and fix it with a pill. And in fact, most patients want to remain in that world as well. We all hate change.
( Time for me to repeat my favorite lightbulb joke. How many Episcopalians/Anglicans does it take to change a lightbulb? "Change? CHANGE?! But my grandmother bought that lightbulb!")
You might experiment with keeping a detailed food log, and also experiment with eliminating this or that food, or entire food groups for a period of time and then re-introducing it to see if you can document any relationship between a possible undiagnosed food sensitivity and I confused and aggravated immune system.
if you can find a functional for alternative medicine doctor, or a nutritionist who is familiar with these new paradigms then this process may be shortened.
I have discovered on my own by accident that I have a gluten sensitivity. And when I went gluten-free, all of my autoimmune markers fell from very high to "boring." but I still had issues. A trip to Cleveland clinic's functional medicine and their elimination diet revealed that I am allergic to one of my favorite foods: cashews. ( Really? cashews? )I'm not allergic to almonds, pistachios or Brazil nuts. Just cashews. in other words I'm allergic to the cheapest easiest protein for this hiker to munch on the trail. Only the more expensive nuts for me! Gee, thanks autoimmune system.
I started where you have ended. I think I've shared with you I've read pearmutter. I started with Mayo -I Arizona. a "functional" internal medicine physician. Larry Bergstron. We did not know what was wrong- I was sent there for very high auto immune markers and repeated surgeries I had undergone inTexas. ( abdominal ileus) .
I have a whole team of registered dietitians there. They are not quite a "holistic" but on their way.
No one figured out it was APS. They figured out the autonomic nervous system was not right. They missed the seizures. Didn't even test for them. Mayo trip was 2011 I think.
I started down the more natural path on my own. We thought I was actually initially fructose intoloerabt- missing aldolase B. I had absolutely years of NO gluten at all . A genetic test revealed this was not the case because there are frucatans in the wheat. I am still a fructose mal absorber- so I have limited fructose. I still have a RD on board. I watch gur gum, all those things most people never think of at all.
During two years of no wheats/ sugars ( and I mean full carbohydrate chemistry discussion with RD supervision) not this silly discussion I'd hear from people, " oh yeah, I watch my breads and sugar..."
I was still violently ill and in surgeries.
Why? Undiagnosed APS. A very severe case and I was clotting into bowels. All the ileus I was experiencing certainly had my biota gut biome off and I had colonies way out of kilter and homeostasis. This explains fructose mal absorption for sure. ( I use anhydrous dextrose by the way. Very little. )
I've never really discussed with you because it's soooo complex. Yes. I'm well aware. It's way beyond that. That's that part of a much larger picture. If you are clotting severely, no amount of balancing the gut biome can fix it. The gut biome disturbance, for me, was a direct result of clotting and gut total shut down. Only by proper anti coagulation did it resolve, then I'm restoring by the sensible knowledge I had already gained much earlier on. Functional medicine and intergrativevmedicine is very key and not widely used enough at all.
Micro biota and the gut biome are hugely important. Gluten sensitivities are very key and I think greatly overlooked and poorly understood, especially in light of APS.
I'm on Warfarin, Lupus Anticoagulant positive but for some reason was recently retested by St Thomas' who confirmed what I already knew which is I have Aps. No idea how they tested it because I thought it was irrelevant but clearly there is a way of testing when taking Warfarin.
Since you know you have APS and how severe it is I'm not sure how the test would make a difference in your treatment. On the other hand, if you just would like to know and your insurance covers it have it.
On Dr. Hughes' last blog he mentioned immuno-suppressives in difficult cases. Have you discussed this with your doctors?
Yes, that's part of why they want to test for it. You are on to the right track. That's one discussion we are having, Anne. I'll look at the last blog. I think really we are just trying to eliminate or understand/ control the variables that are making it so labile.
Not that I know of Cindy. I asked my main ( adult ) heme in San Antonio about this and he wasn’t sure if they drew for it or not. He went back and asked his lab and came back and sent me across the hall for a draw ( a send out) wiith a slightly different name but almost the same. I should have those results back- I call my INR in each Thursday but have just left message the last two times.
Last Tuesday I was I whole point lower than finger prick read Home checker stated. I knew something was wrong. I went to hospital lab ( home town) where I have standing order. I had migraine, horrible balance problems, etc. I was 3.0 by vein instead of 4.0 basically.
My INR needs have changed. My doctors have recognized this and have shifted/ adjusted but we don’t understand why this has happened. I even clot if I drop belly 3.5 now, but it has to be if I stay below for 48 hours. If it’s a quick dip I’m ok. But I’ve realized I can’t trust the machine.
We can’t understand why me need for more Coumadin / higher INR is increasing. This is not the norm. I can’t stabelize once I’ve plateaued.
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Positive Test Results
New to APS and terrifie.
Recently Diagnosed with APS and a little confused.
it's all so confusing!
