How many have antiphospholipid antibodies?

[ChookityPop]

I have now tested positive 3 times with 12 weeks a part. I dont have a confirmed blood clot event or miscarriage/premature birth (as Im a man) which is required to be diagnosed with antiphospholipid syndrome. I Wonder If its possible to have a clotting event without even knowing? I have blood pooling that sometimes have manifested in swelling in my calfs and feet though I should mention I have gotten it while using compression tights, jeans etc which could explain it.

But I clearly have these antibodies and I Wonder How mang others on here have Also tested positive?


Diagnosis

Medical assessment

If blood tests confirm you have APS, your medical history will be carefully assessed to check whether you have experienced any previous symptoms that may be caused by APS.
A diagnosis of APS can usually be confirmed if you have had:

• 1 or more confirmed blood clots
• 1 or more unexplained late miscarriages at or after week 10 of your pregnancy
• 1 or more premature births at or before week 34 of your pregnancy
• 3 or more unexplained early miscarriages before week 10 of your pregnancy

​

 

[Judee]

I have not been tested for this.

 

[Gingergrrl]

I recently tested positive for anti-cardiolipin autoantibodies but was not tested for the entire antiphospholipid syndrome panel. I hope to do this in the future and will be discussing w/my doctor next week. I've never had a blood clot, or any of the other known symptoms of APS, and am hoping this text result was just a fluke (vs. my overall autoimmunity is getting worse)! Also, my anti-cardiolipin Ab was just barely in the positive range and was considered "indeterminate".

 

[Learner1]

I have now tested positive 3 times with 12 weeks a part. I dont have a confirmed blood clot event or miscarriage/premature birth (as Im a man) which is required to be diagnosed with antiphospholipid syndrome. I Wonder If its possible to have a clotting event without even knowing? I have blood pooling that sometimes have manifested in swelling in my calfs and feet though I should mention I have gotten it while using compression tights, jeans etc which could explain it.

But I clearly have these antibodies and I Wonder How mang others on here have Also tested positive?


Diagnosis

Medical assessment

If blood tests confirm you have APS, your medical history will be carefully assessed to check whether you have experienced any previous symptoms that may be caused by APS.
A diagnosis of APS can usually be confirmed if you have had:

​

• 
  
  • 1 or more confirmed blood clots
  
  
  • 1 or more unexplained late miscarriages at or after week 10 of your pregnancy
  
  
  • 1 or more premature births at or before week 34 of your pregnancy
  
  
  • 3 or more unexplained early miscarriages before week 10 of your pregnancy

​

It's not limited to women. As it can cause death, it would be worth pursuing treatment.

"Antiphospholipid syndrome (APS) - NHS" https://www.nhs.uk/conditions/antiphospholipid-syndrome/

 

[Countrygirl]

I was first diagnosed with a blood clot when I was 15 and had several over the years until I had a full stroke and a number of TIAs. My 23and me report detected a blood clotting disorder. I was given a diagnosis of possible anti-phospholipid syndrome years ago by a doctor but when I asked for a test this year, I was refused as I was told there is no point.

 

[manasi12]

I was tested for three antibodies of APS panel and I'm consistently positive for anti beta 2 glycoprotein antibody (IgM only) thrice now. I have Sjogrens syndrome (SSA positive) and severe POTS.
Re APS, my doctors said it is commonly associated with Sjogren's. I do get livedo reticularis on my forearms and legs. My rheumatologist advised me to take baby aspirin daily.

 

[ChookityPop]

I was tested for three antibodies of APS panel and I'm consistently positive for anti beta 2 glycoprotein antibody (IgM only) thrice now. I have Sjogrens syndrome (SSA positive) and severe POTS.
Re APS, my doctors said it is commonly associated with Sjogren's. I do get livedo reticularis on my forearms and legs. My rheumatologist advised me to take baby aspirin daily.

Thanks for sharing. I seen the association with Sjogrens but I have tested negative though I would like to get a lip biopsy just to be sure. Do you benefit from the baby aspirin?

 

[manasi12]

@ChookityPop ..to be honest , I didn't take aspirin regularly. I'm worried if it may cause bleeding and didn't want to add another medicine. But finally after Covid in March, I started taking it as my d dimer was raised.
I'm now suffering from long covid. I already had chronic osteomyelitis and myofascial pain syndrome after wisdom teeth extraction 3 years ago. So I'm a total mess right now.(Sorry for rambling) .
But I can't really say aspirin is helping me due to these additional issues.
Re Sjogren's, it is worth exploring if you have associated dysautonomia, pain etc.

 

[Gingergrrl]

I was tested for three antibodies of APS panel and I'm consistently positive for anti beta 2 glycoprotein antibody (IgM only) thrice now.

Were you tested at LabCorp and if so, do you know which specific panel you did? No worries if you do not remember. There seem to be multiple panels for APS and it is confusing!

 

[manasi12]

Were you tested at LabCorp and if so, do you know which specific panel you did? No worries if you do not remember. There seem to be multiple panels for APS and it is confusing!

Hi , I'm in India and my rheumatologist ordered APS panel consisting of anti beta 2 glycoprotein , Lupus anticoagulant and anti- cardiolipin antibodies. I guess there are other auto-antibodies too in APS but these three are more routinely tested here.
My beta 2 glycoprotein antibodies are mildly elevated (40 and 33 at different times). I would like to know what Dr Kauffman thinks of these or other antibodies of APS ( I guess he is your doctor). Is it just a co-incidental part of autoimmunity or do they need serious consideration ?
I tested positive for anti centromere antibodies too.

 

[Gingergrrl]

Hi , I'm in India and my rheumatologist ordered APS panel consisting of anti beta 2 glycoprotein , Lupus anticoagulant and anti- cardiolipin antibodies. I guess there are other auto-antibodies too in APS but these three are more routinely tested here.

Thank you and I forgot that you are in India vs. the US when I mentioned LabCorp! It seems that LabCorp has multiple APS Panels and I'm trying to confirm if the one that I'll be doing in Dec/Jan contains the three main APS autoantibodies that you mentioned above (but I am pretty sure that it does).

My beta 2 glycoprotein antibodies are mildly elevated (40 and 33 at different times). I would like to know what Dr Kauffman thinks of these or other antibodies of APS (I guess he is your doctor). Is it just a co-incidental part of autoimmunity or do they need serious consideration ?

I have never tested for beta 2 glycoprotein antibodies or discussed them w/any doctor (and this should be part of the APS Panel that I will do in Dec/Jan). In my own case, I tested positive for Anti-Cardiolipin Abs (at a very low level) and this is why I will be doing the entire APS panel in the future to see what it shows. I wish I knew more about this or could be more helpful! What did your doctor say in your case?

I tested positive for anti centromere antibodies too.

What are anti centromere Abs?

 

[manasi12]

@Gingergrrl ..hi , didn't log in forum for a few days. So couldn't reply earlier.
My rheumatologist wasn't sure what does only IgM positive antibody mean. He thought it is better to take baby aspirin daily.
But Dr Goodman(Arizona, Mayo) had mentioned in vimeos that APS antibodies are frequently found in association with Sjogren's and POTS (with autoimmune component).
May I know if you did take covid vaccine ? I like the way you do your meticulous research, so asking you. l I'm in dilemma as well as my doctors here.
Given my severe POTS and autoimmune issues, we aren't sure about vaccine. These APS antibodies are also a factor in my case as we have Astra zeneca vaccine in India (given its clotting issues particularly).

 

[Gingergrrl]

My rheumatologist wasn't sure what does only IgM positive antibody mean.

When I was tested for the anti-cardiolipin antibodies, the test was broken down into IgG, IgM, and IgA and I was only positive for the IgM. I am not sure what this means either but my IgM was just barely in the positive range and was considered "indeterminate". I will be doing the entire APS panel in Jan and will let you know when I learn more.

He thought it is better to take baby aspirin daily.

Are you doing that now? I am allergic to aspirin (since I was a child) and this is common in people with MCAS. In my case, my doctor feels that I do not have APS but we want to run the entire panel to completely rule it out.

But Dr Goodman(Arizona, Mayo) had mentioned in vimeos that APS antibodies are frequently found in association with Sjogren's and POTS (with autoimmune component).

That is interesting and I also have POTS (but not Sjogrens). My doctor did not mention this but he said that it is common for people with MCAS to test positive for all kinds of random/rogue autoantibodies.

May I know if you did take covid vaccine ? I like the way you do your meticulous research, so asking you. l I'm in dilemma as well as my doctors here.

I did not do the Covid vaccine after doing meticulous medical research and discussing it with my two main doctors and my former doctor who retired. In my case the decision was purely medical and there was zero political component to it. I have not done very much research into anti-phospholipid syndrome but if my test in Jan comes back positive, then I will do this in the future.

 

[Consul]

Fereshteh Jahanbani tweeted about this syndrome in pwme. Says the inner mitochondrial membrane have alot of cardiolipins that can get targeted.

edit:

https://twitter.com/i/web/status/1600652094398005249

 

[SWAlexander]

If you like read post #22 https://forums.phoenixrising.me/thr...erangement-diseases.89093/page-2#post-2420757

 

[Consul]

https://www.frontiersin.org/articles/10.3389/fmed.2020.00108/full

With reference to my previous post here, this study didnt find cardiolipin antibodies.

 

[Consul]

Eeh but then there is this study

https://onlinelibrary.wiley.com/doi/10.1002/jcla.20325

Weird

 

[SWAlexander]

I've never had a blood clot, or any of the other known symptoms of APS

Not all people with APS have blood clots or thrombosis. Only an APS blood test can APS confirm.

A proper diagnosis should start with a D-dimer.
If there is an indicator next step would be to test for Von Willebrand Factor (VWF). If VWF confirmed next would be an APS test.
In addition, a Cortisol Test also would help:
Addison’s disease in antiphospholipid syndrome: a rare complication
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280132/

 

[Gingergrrl]

Not all people with APS have blood clots or thrombosis. Only an APS blood test can APS confirm.

I never ended up doing the APS panel b/c my doctor did not feel that it was needed in my case (with only the borderline/indeterminate positive for anti-cardiolipin back in 2021).

In addition, a Cortisol Test also would help:
Addison’s disease in antiphospholipid syndrome: a rare complication
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280132/

I do have Cortisol issues (and monitor this regularly) but not connected to APS.

 

[SWAlexander]

Gingergrrl, the same neglect happen to me in the US.
UNMH 1996 (after sepsis) also didn't believe a VWF or APS test was necessary, in spite of many indicators. UNMH diagnosis was "just muscle weakness".

When I came to Germany in 2019 I met a Rheumatologist by end of the year who listened as I lay out my symptoms and theory (incl. prev. diagnosed adrenal insufficiency) and he agreed to test. Bingo.
Jan. 2020 I forced my PCP to send me to have a sonogram for thrombosis, again Bingo.

If I would not have been stubborn, (or as the Dr´s called me a demanding and uncomfortable patient) who knows where I would be today?
It is worth fighting for evidence.