I have seen this question posted in APS Facebook groups. I am hoping someone knows the answer.
Do our APS antibodies only go after the phospholipids in our red blood cells or do they attack phospholipids in all cells?
What about phospholipids in supplements, foods (lecithin), and skincare products?
Ive wondered about this myself, i think ill follow along- Good question, Cindy
Usually you need an injury to a blood vessel wall which exposes an underlying scaffold. This can happen with atherosclerosis, hypercoaguable state other than APS, abnormal vasculature. Once the scaffold is exposed, your body releases signals that something is injured. This is where things go awry. The reparative mechanism doesn’t work to heal and rebuild the vessel wall like in normal people. Antibodies attack the walls forming a dysfunctional clot. It eats up your clotting cells/platelets and shears open your red cells as they squeeze pass the clot.
Different people form different antibodies which are specific to fatty and sugar molecules on or in phospholipids. It’s quite an interesting phenomenon.
Well stated - easy to understand.
I will only add, that food that contains fat, once digested can be released into our blood, (cholesterol), can increase the phoshilipids, therefore increasing our risks. Which is why many of us our given statins and advised to go on low fat diets.
I would presume this would include supplements?
And I would add, advised quite often to add a statin to the mix .
Most of the cholesterol in our bodies is manufactured in vitro rather than consumed. Statins and low-fat diets seem to be a bit of a knee-jerk inflexible reaction from the doctors rather than properly considered. I was put on both after stroke, what happened? - crippling pain, constantly on painkillers in order to sleep at all, ability to walk (or do any exercise) severely reduced, muscle mass lost, cholesterol UP, liver bloods all over the place (ALT up, triglycerides up) and high serum creatinine too.
Stopped statins and much of that fixed itself, stopped the low-fat nonsense and my cholesterol and triglycerides then went DOWN fixing that too.
We're all different, and what works, or doesn't, for me may be different to what works for others.
But the annoying thing is that this doesn't come across (in my experience) when dealing with doctors about APS - low-fat seems to be the only diet option they will entertain and warfarin the only drug option (which itself further restricts diet options).
It is not doctors per se though - the contrast with the handling of my blood pressure problem couldn't be more stark, at every level from GP to consultant it has been emphasised that it is "what works for me", and I've had consultations go through all the six common drug-groups pros/cons side effects etc. and they have allowed me to switch drug groups / drugs / brands and doses until I get a stable combination at a side-effect level I am happy with.
Thank you for the great explanation, it really helps to lay it out that clearly. MaryF
My hematologist test for Antiphospholipid levels along with the other test for APS. Do you know what it means if the test results are high besides the patient has a lot of Antiphospholipids running around?
Thank you for replying in a way that I can imagine it happening.
I can’t really shed light on this other than they will run a lupus anticoagulant panel (which I will never be able to simply explain) and test for cardiolipin and beta 2-glycoprotein antibodies. IgM is the most sticky followed by IgG.
Yes. I know the 3 test for APS. He adds the Antiphospholipid panel to it. And yes my IgM is the highest on the tests. I wish they would venture out and attack all extra fat cell I have accumulated over the years. 😉
So IgM is the most sticky. I thought it was IgG as that one is usually first tried
IgG is far more common. I am of the opinion that numbers are not yet strong enough to really compare the thrombosis risk between IgM and IgG. We just know that cardiolipin IgG is no bueno. I think as we start diagnosing more APS/become more cognizant of it’s nature in unprovoked thrombosis, we will know more.
As someone who studies heme malignancies, I can say anything where IgM is overproduced usually causes more damage than IgG. IgM are like the children of antibodies. Immature, not yet wise and causes trouble everywhere. IgG are the adults - fine tuned and pretty specific to their target.
Does IgA belong to the family also? Not tested often and I think negative in my body. Thank you for your answer!
Also curious about IGA, especially glycoprotein IGA. mine is off the chart. Cardiolipin igm moderate.
IgA is special. Usually used to protect mucosal membranes. Hard to say how these come about and what sets them off. Stumps me as well. But if I had to guess, it is also made in response to bacteria (maybe gut?)that then cross reacts with your own body. I’ll have to do some more reading on this.
Thank you, Dr. Miller.
This must be why my doctors always tell me that clots tend to reoccur in the same , “ vascular bed.” This has been the case for me, and I would assume for many others here.
I , like APSnotFab , am glad you have joined us. I’m only very sorry for the circumstances in which you find yourself amongst new friends.
I hope you are doing well. How can we help YOU?
You have graciously offered help , but don’t forget that we are here to help you also.
You are now among friends who speak a subtle and nuanced foreign language that can at times breach into neurology, and sometimes its very tricky to explain or ascertain the underlying cause. Is it under-coagulation? A low vitamin or mineral?
I’m sorry, I’m not familiar with your clotting history.Are you currently on warfarin? If so, are finding yourself fairly stable? I really hope so, as this makes day to day so much easier...
Again, thank you for offering up your friendly services!
No need to call me Dr. I am human like everyone else.
My history....well....always had weird rashes as a child. Blistering in the sun by my teenage years. Recurrent UTI during college. Didn’t really hit me until Med school when I developed “mono”. Never been the same since then. Always tired. Always had waxing and waning lymph nodes and whole body swelling.
Then I got really bad pneumonia out of nowhere and this changed everything. I’ve had raynauds for forever. But then I started get livedo from head to toe. My hands stayed permanently blue. I had super bad esophageal dysmotility - lower portion of esophagus just doesn’t move. It’s not scleroderma. I have a whole bunch of weird neuro abnormalities - face drooping, muscle wasting here and there randomly. Feels like myasthenia meets peripheral MS for me sometimes.
I’ve never had a clot. I’ve never tried to get pregnant and don’t plan to so I’ll probably never earn a true APS diagnosis. I’d like to keep it that way. Initially on full dose aspirin, HCQ 300 and Imuran. My liver hated Imuran so I tried CellCept which put me in the hospital with v tach. Lupus anticoagulant was really bad even with treatment. I don’t have a positive cardiolipin or glycoprotein. My hex lipid and PTT are always positive.
My biggest issue is the autonomic and small fiber neuropathy. Swallowing problems really bother me. I reflux up into my nose at night. Makes it hard to sleep. Anyone ever had that problem? I lifted my bed. Nasal rinses every morning. Always hocking up new colors. Makes it hard to breathe at times.
What treatment did you have for your Lupus Anticoagulant? Have you had an Echocardioogram with doppler on heart/lungs? Any High bloodpressure?
Was on steroids for about 3 months. Currently just on HCQ and aspirin. No anticoagulant. I argued to go on warfarin because my livedo was so bad that my feet and hands hurt/ulcerated but the steroids and increased HCQ dose have worked wonders for this.
I had an echo last August. Mild pulmonic regurgitation. Otherwise normal. Been scanned head to toe without any sign of blood clots.
Oddly, my blood pressure has been really bad. Always ran 100/60 then over last year it’s been rising rapidly along with my heart rate. I’m on propranolol. I can’t come off of it. My heart goes crazy like an arrhythmia and I turn beet red from blood pressure issues. BP now running 130s/80s. Highest I’ve seen it is 180/100. Diastolic is always high.
I have had very high bloodpressure and I am triplepositive with persistantly very high titres. Live in Stockholm.
For several years Pulmonary Hypertension (stable) and leaking Tricuspid- and Mitralvalves. My Cardiolog wants me on an INR around 4.0 and with three different sorts of bloodpressure/heart-drugs and Warfarin I am feeling quite ok. I have normal heartrate and my Cardiologist does not want me to be over 130 in systolic rate. Earlier in 2002, when I got my diagnose, they always talked about the diastolic value but that is ok. I am 75 years old today. I also was an Administrator last year on this site but wanted to go back to my painting but that is now no use as my hands hurt when painting. Warfarin has been my lifesaver.
Yeah. I have to wait for a dreaded blood clot before I get to go on warfarin. I also have a small brain aneurysm. I’m sure it’ll happen someday. At least I’ll know why. Habits I’ve grown to love and didn’t know why - wearing 2 pairs of full length control top nylons to keep my swollen legs in check, always carrying gloves with me come summer and winter.
I trust my hematologist. It’s very odd having worked with some of the physicians that treat me. I trust this man with my care and would trust him to take care of my own family. He says no warfarin, I say ok. He is kind of a coagulation savant so I’ll take his word. No blood clots through my worst time so I’ll keep my fingers crossed.
Clots used to worry me a lot esp with what I thought was a TIA but since I’m on an upswing, I feel more positive. Could never quite get to therapeutic dose of HCQ because it gave me horrid palpitations. With the propranolol, I am now at a dose that works. Working out daily. Looking at employment opportunities.
I’m very glad you are comfortable with your Hematologist, Jm. It’s not easy to find one that’s heme centered instead of onc centered. That’s usually just demand driven, at least where I am.
To answer a previous general question you had, our son refluxes. He is almost 18 now. ( next month.)
He has the most trouble with this in middle school.
We didn’t realize this is what was causing a cough/ asthma. His GP caught the problem.
He was put on two different inhalers, and a proton and a proton pump inhibitor.
We raised the head of bed- my husband Made a plywood wedge that went under the mattress itself- at a gentle slop 10 degrees-it wasn’t even noticeable but made a nice difference with regards to reflux. He , “ sort of” avoids greasy foods. He’s much better with it now that he’s older.
He still gets infections / colds/ flus too often. He’s being sent to an ENT specialist in two weeks.
He does have auto immune ulcerative colitis as well- begin in kindergarten with bleeding. He was in a pediatric azacol trial.
He’s doing great- and he’s been in remission for years, we don’t even think about it.
So I’ve been told no PPI because of osteoporosis risk. I raised my bed 8 inches. Besides reflux, the whole bottom portion of my esophagus just doesn’t move. Started having these symptoms about 2 yrs ago.
Sorry for delay in response. Went back on Imuran for swallowing on Tuesday. Had a really bad reaction. So I’m nursing myself back to lupus state health after another trip to the ED. Feeling so unlucky right now.
A good paper. Quite technical but answers a lot of questions on this post....
If you can decipher and have questions, let me know. I may be able to clarify some but not all as I’m not an APS expert. Just a doc with lupus.
I have to say I have no idea whatsoever. I wish I was able to answer you
Can APS go away or into remission? How about exercise and diet?
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Is it possible to have APS or Lupus with negative blood tests?
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APS Specialists in North Carolina near Raleigh or Cary
