Antiphospholipid antibodies

[LemonZest11]

What’s this all about? I’ve looked it up, but any personal experiences or information would be of interest to me. Thanks.

[Koalajane]

I don’t even know what they are or what this is to do with?

Covid, PMR?

[piglette]

High levels of this antibody may mean you have a higher risk for blood clots. I had a positive D-dimer which checks for blood clots but I think they are different tests. Have you had the test? If so what symptom did you have that required it?

[LemonZest11 in reply to piglette]

Slightly blotchy skin.

[piglette in reply to LemonZest11]

Interesting. Did you see a dermatologist?

[LemonZest11 in reply to piglette]

No, Rheumy noticed mottling on my legs while checking my knees and that was enough for her to begin an investigation. I think it's probably nothing but she wants to check it out.

[KellyInTexas in reply to LemonZest11]

Mottled skin- called livedo riticularis. (Can also be caused by a few other things. )

[fmkkm]

Hi,Did your doctor run this test? It’s in a lot of the autoimmune panels when they are hunting for a diagnosis.

[LemonZest11 in reply to fmkkm]

Yes, no results yet.

[PMRpro Ambassador]

You would get far more response on the LupusUK forum.

nhs.uk/conditions/antiphosp...

rheumatology.org/I-Am-A/Pat...

[fmkkm in reply to PMRpro]

Now you’ve got me down a rabbit hole. I remember reading about anti phospholipid syndrome after Covid infection. Some research is suggesting Covid infection is responsible for blood clots caused by APS . directorsblog.nih.gov/2020/...

[PMRpro Ambassador in reply to fmkkm]

[KellyInTexas]

Hello Lemon Zest.

I am an admin on here on Health unlocked. The specific forum the Huges syndrome- Antiphospholipid Syndrome.

But before you “go down that rabbit hole….”

Ask and answer a few questions- basic ones, because Antiphospholipid syndrome (usually abbreviated APS) is fraught with complicated tests and confusion.

APS is also known as Hughes syndrome, in honor of Dr Graham Hughes, who lead the team who first described the syndrome in 1983 in London- so not all that long ago. He notices some of his patients in the lupus clinic clotted, has blue mottled skin, tended to have seizures and 90% miscarriage or still births- why? They were different to the other lupus patients.

They discovered they had specific antibodies that caused the blood to be prothrombotic.

Here is the gold standard for diagnosis of APS: there are two parts to it.

Part 1: Labs

There are really three basic blood tests For APS antibodies. They must be repeated 12 weeks apart, and should be positive both times to rule out a false positive.

A good , seasoned rheumatologist with ample working knowledge of APS will be able to tease out the reason why a false positive might occur. Certain epileptic medications, certain antibiotics, and some illicit drug use like cocaine can cause the body to throw out APS antibodies. A recent infection ( especially Covid as it turns out) can also trigger the body to throw out APS antibodies.

Age. Older individuals may also have a slightly higher than the lowest normal limit of APS antibodies.

Part two: Clinical

What is your actual clotting history? What is your actual current risk of forming a clot? How does the specialist balance that risk against the risk of medicating you with an anticoagulant and then risking a bleed? ( there is a very detailed criteria this decision is based off of that was last updated in 2019 and I will include it if you would like. )

If you are indeed positive antibody wise, then very detailed questions should be asked.

Your history of pregnancy, live births, complications ( if any) , pre eclampsia, still births, low birth weight.

Any low platelet history

Any bleeding history

Migraines

Seizures/

funny turns / brain fog/ poor memory to the point you fear Alzheimer’s. ( our brain does require proper oxygen! Sludging blood does not provide this.)

possible TIA events/ or strokes

Chest pain / angina/ actual heart attacks

Abdominal angina ( bowel ischemia/ even micro clotting after meals)

Family history is auto immunity, heart attacks, strokes, migraines, clotting history.

Poor balance at times

Odd visual disturbances- clots to eye vessels - impaired flow to retinal

ghicworld.org

*post script: forgot to say- yes. I have person experience with this. I have a very severe case.

[LemonZest11 in reply to KellyInTexas]

Thank you. That's the best information I've read, very clear and straightforward.

[MariGrace in reply to KellyInTexas]

My goodness my goodness. I've just been diagnosed with TIAs (also amaurosis fugax). My platelet count is ridiculously high - especially on 2 blood thinners. I had two miscarriages, and I've had a bad valve since the age of 2 - replaced only a few months ago. So much more. They keep testing for lupus, I have the symptoms - never positive (thankfully).My family has a history of 'sudden death' - I now think has a lot to do with the blood disorder.

Coffee has been a help for 'fuzzy brain.' Wow. Thanks for your great information. Nobody has shared this with me. Will research Hughes Syndrome - right now! I've never heard of it. The blindness in my eyes, followed by the cardiologist putting me in the hospital for tests - was the discovery of the TIAs and the clots in my new valve. ugh.

I'm grateful for great doctors. I'm in Arkansas - with a son in Texas. Thank you. so much!

MariGrace

[KellyInTexas in reply to MariGrace]

Apixiban is really not indicated for patients with APS, MariGrace… this may be why you have clots in new valve.

Read below to my response earlier.

Do not let anyone put an IVC filter in - not compatible with APS. I have a specialist hematologist for APS. This was the response for this issue at least in 2018. To my knowledge it has not changed.

The solution is to correct the blood .

Would you like to have an appointment with my hematologist in Texas? Where is your son?

[Amkoffee in reply to KellyInTexas]

Wow your explanation was better then any doctor I've ever seen about this. I just went thru all the genetic blood tests for clotting disorders and thankfully all were negative. I have a history of blood clots (DVT, stroke, TIA, thrombophlebitis and brain lesions suggesting multiple silent strokes) so I take a platelet thinner rather then a blood thinner. I do not have lupus nor did I ever miscarry a baby. I also do not have a family history of blood clots. I guess my blood just likes to clot.

[Hidden]

My dad has had it for over 30 years, he’s now 81. Generally he’s well but takes warferin and has his blood checked weekly. Initially he suffered from blood clot and often has swollen legs.

[LemonZest11 in reply to Hidden]

Thank you for responding. I hope he continues to stay well.

[Springer2210]

My daughter was diagnosed with Antiphospholipid Syndrome (APS) in 2018 after a blood clot on her lung. She was put on blood thinners (Warffarin & then Apixaban) for life.

[LemonZest11 in reply to Springer2210]

Great that they diagnosed her and were able to ensure her good health into the future. I hope that she continues to keep well.

[Springer2210 in reply to LemonZest11]

Thank you, sadly she died on 30th November 2021 from Stage 4 Triple Negative Breast Cancer.

[LemonZest11 in reply to Springer2210]

Oh Springer, I am so sorry to hear that. I hope you are doing ok.

[Springer2210 in reply to LemonZest11]

Yes I'm ok thank you LemonZest. I am making sure I have plenty of "me" time & I have a great group of friends around me for support.

[LemonZest11 in reply to Springer2210]

🌹xx

[phebamom]

I once had very high anti-phospholipid and anti-cardio-lipid antibodies in a blood test. The doctor diagnosed Hughes syndrome. One month later I was diagnosed with cancer of the uterus. After a total hysterectomy the blood tests were back to normal. My cancer was estrogen driven. that was 20 years ago. I am fine now, except for the PMR/GCA. I always wonder how much of these issues are hormone driven.

[LemonZest11 in reply to phebamom]

Yes, I wonder about that too. I was diagnosed with LCIS back in 2000. Options were radical bilateral mastectomy or tamoxifen, which targets estrogen. I went with the surgery and, like you, I have been fine. Now these autoimmune battles are challenging me. Thanks for your response, stay well.

[MariGrace]

Yes. I have been diagnosed with antiphospholipid syndrome. It is also called hypercoagulability. (background - I'm in my 6th year of PMR and am taking 10mg of prednisone a day.) I was tested by a hematologist because after a bout of blood clots in my leg and both lungs at the same time, I was given Eliquis. Well. Fast forward. I got another clot while on Eliquis and my doctor sent me to a hematologist. He found the antiphospholipid. During this time, I had a heart valve replaced. I was put on plavix for that (combined with the Eliquis) but. Yes. Developed blood clots in my heart valve and it was discovered I am a 'plavix non-responder.' *sigh* Now, I take two Eliquis a day and two Brilinta a day and wouldn't you know, my blood is still very, very thick. I see the hematologist every 6 months or as needed.)That is my experience with antiphospholipid and it is ongoing. It's a serious thing, I'm unable to come off the blood thinners for any reason.

Oh. that the PMR would go away. My medicines are lined up like little soldiers - labeled and moved as I take them. I'm 74.

I had a vascular study recently and my legs have 'veinous insufficiency' resulting from the blood clot damage.

** Listen to your doctors. Be careful. I don't know your history, but this came as a shock to me. Who knew? I've never heard of this - ever. There is a cousin to me who has been on blood thinners for years. She also had Behcet's - another of my five autoimmune diseases. We think we are genetic twins. I wouldn't wish this on anyone. However, it can be managed and really needs to be managed carefully (in my humble opinion.)

I have not had covid. I have not taken the vaccine. (Am not a candidate for the vaccine.)

My other autoimmune diseases are Behcet's (in remission), Hashimoto's, and Renaulds,

Sorry to be so lengthy in this response.

Take care. MariGrace

[LemonZest11 in reply to MariGrace]

MariGrace, thank you for responding. It's very late here in Australia so I'm going to reply to you more fully tomorrow. Xx

[KellyInTexas in reply to MariGrace]

MariGrace,

Any blood clotting disorder is considered a prothrombotic disorder.

APS is not known by any other name other than Antiphospholipid syndrome, or rarely, Hughes syndrome.

I’m only saying this to make sure you are getting adequately clued up medical care.

APS does cause “vegetations “ on the heart valves. It’s a known complication of the antiphospholipid syndrome.

It’s known as #Liebmann-Sachs syndrome. ( or non infectious endo-carditis.)

I can link you to the 2019 EULAR recommended guidelines for APS if you like?

And yes, APS is definitely linked up with other auto immune diseases, usually those that fall under connective tissue I’m really, but surprisingly enough we can share the lucky lotto ticket with MS patients as well.

Hope you are keeping well, and glad you have recovered.

[PMRpro Ambassador]

Considered to be "a rare clinical event"

academic.oup.com/rheumatolo...

"This study shows that APS may be present in patients affected with PMR and/or GCA. However, despite the significant prevalence of aCL and anti‐β2‐GPI in the blood of subjects with PMR and/or GCA [3–7, 9–12], finding these diseases and APS in the same patient represents a rare clinical event. Indeed, only three of 248 patients affected with PMR and/or GCA also had overt clinical and serological features of APS. ...

... Regarding the relationship of PMR/GCA with APS, we observed that the latter occurred either after (cases 2 and 3) or before (case 1) PMR and/or GCA. Moreover, PMR and/or GCA flare‐up was never concomitant with APS manifestations, and anticoagulant treatment alone was able to control the clinical complications of APS, without increasing steroid therapy. These observations indicate that APS could be considered an independent disease."

[PMRpro Ambassador]

In general probably - but this was a specific study

[LemonZest11]

I haven't had "An event" but Rheumy noticed mottled skin on my thighs while looking at my sore knees. That was enough for her to start investigating. Haven't heard back yet, but I have an MRI in a couple of weeks so she'll probably wait for that result and discuss with me then. In the meantime, the approaches to Federal Health continue re tocilizumab.