I have never had a blood clot, I tested positive for beta 2 glycoprotein 5 times 12 weeks apart, have had 2 early miscarriages 10-11wks and 1 ectopic pregnancy, livedo recticularis. Based off this my rheumatologist diagnosed me with antiphospholipid syndrome. Then I seen professor d cruz and he said I don't feel I need to do anymore tests I believe you have antiphospholipid syndrome. The only thing he was concerned about was I was on warfarin and I have never had a clot and to maybe speak to a hematologist. The reason I was tried on warfarin is because I have a movement disorder and wanted to try and see if it would help if my neurological symptoms are caused by aps
So I seen a hematologist today who said I don't meet the criteria for a APS as beta 2 glycoprotein numbers are not high (but positive) even though on the test results it was highlighted as High next to it) and igg is not positive only Igm, ectopic is not part of criteria for miscarriage (ectopic was the 3rd loss I had) I haven't had a clot and livedo recticularis is not part of the criteria. But then in the next breath said people can be zero negative and has aps, but discarded the fact I consistently tested positive for beta 2 glycoprotein 5 positive test over a year. I feel like the rheumatologist will listen to her and now I'll be left with the possibility of a clot in the future.
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Hi, I sort of wonder if I’ll get similar at my next heme appt. I’m consistently positive for IGG, but not IGM, only from time to time for Lupus anticoag. I do however have a non resolving CVST (which is closely associated with APS) and an erratic INR so have been told I can’t self test and the neurologist is absolutely clear that stable anti coagulation is essential.
So it’s pretty marginal whether I meet the new criteria. However, they are supposed to be used only for lab classification and not diagnosis. It’s perhaps worth googling for the new criteria and taking them back to your rheumatologist. Having said that many would not keep you on thinners without a history of clotting, but only during pregnancy.Perhaps a second opinion if that’s possible.
Hi there.I have cerebral antiphospholipid syndrome and have been on warfarin since 2015.I also went to see Professor Cruz for a few years aswell as my rheumatologist.I have never had an episode too but it has always been insisted I remain on warfarin.Very puzzling
In the states warfarin has generally only been used for APL positive peeps with a history of a clot. They generally treat pregnancy loss with positive APLs only with aspirin and heparin during pregnancy and it is differentiated from TAPS( thrombotic APS) and considered more as a temporary condition and only treated if one wants to get or stay pregnant. Research has proven that the risks of warfarin far out weigh the benefits for those with out a history of a blood clot. Your history shows a history of pregnancy APS not thrombotic APS so unless you are trying to have a baby there is no need to test or treat at this time.
I've been positive to anticardiolipin 3 times, 12 weeks apart. Mine is only IgM too and I was told they didn't know the clinical significance of that, only the IgG or something. I was a bit puzzled too, as I have quite bad livedo reticularis along with symptoms of APS and Lupus. As far as I know I haven't had a clot or miscarriage (narrowing was found on MRI and CT scan, but they seem to think it's "developmental" - I'm not fully convinced). Ironically, I've always been too ill to consider having children. So they told me I don't have APS too.
I'm also worried that I'm some kind of ticking timebomb, waiting to have a clot or stroke, so I can understand how you feel. I don't really have any advice, but hope you feel less alone to know you're not the only one.
It was found during brain scans, but the narrowing was at "junction of left transverse and sigmoid sinus". There were "multiple filling defects along transverse sinus bilaterally" and something about part of one side being smaller than the other. They said it's not from past thrombosis, but my worry is that I have an antibody known for clotting AND a narrowing - it seems logical to suspect it might be causing some of the cognitive and psychiatric symptoms I experience. I'd read in a study that isolated IgM anticardiolipin was linked to worse neurological symptoms too.
I do want to feel like I can trust what they're telling me, but I've had so many misdiagnoses over the years that I think I'm overly suspicious now!
Oh yeah I known what you mean about trusting what they're telling you. You certainly would feel scared given what you do know. I feel like everything you bring up is never a problem, almost make you feel like a hypochondriac. It's always no APS wouldn't cause that. I got mild aortic stenosis but told wouldn't be APS related
Yes, it is so confusing. I guess that is what makes us so popular . I had a lifelong struggle ( as have most of us) with a diagnosis I am an adoptee and have zero family history information so I had to go to court to break the seal only to be told the file had been taken
Warfarin I think is a tough drug to take. Yuk But I personally have had 2 pulmonary embolisms I was on a trial of warfarin after the first one They thought it was just a fluke and discontinued after the first But then after the second I was told it was for life Undiagnosed at that time
After all of that I encountered a doctor who said I didn’t have to take anything!? Hopkins
I don’t know where you reside but I took myself toHSS in NYC And asked for an opinion from someone who was doing the research Since we are so rare I though they might be able to advise best. They have all the data and might even be able to find someone with your criteria And that data may help them decide what worked for them Or what did not
We are all so different! I also had 4 misses and without D&Cs would probably not be here today. I think this forum has been great And also I think their input on doctors to see essential.
But it is entirely what you feel comfortable with . We can’t advise Maybe only share what has or has not worked for us If you consider that most of us have walked around for years undiagnosed with something that didn’t even have a name - you might understand why you are struggling.
Welcome to the Ticking Time Bomb Club!
I don’t know any here who would opt for this experience But it’s like that poem that is a mantra for learning disabilities and parents I wanted to go to Holland Whatever am I doing in Italy ?
Not sure if you are in UK or not, but as well as the other links people have given, you might want to look through the latest - 2024 - guidelines from BSH (British Society for Haematology ) which cover diagnosis and management. onlinelibrary.wiley.com/doi...
It's long but there are whole sections you can easily skip. Without a clot, ever, my guess is you come under "persistently positive APL carriers", although maybe obstetric APS is also relevant - but I don't think any treatment is given for that outside pregnancy.
The management of lower risk APL carriers has changed in recent years with much less emphasis on clot prevention drugs (which profs Hughes, Cruz, etc. were keen on, including heparin trials, which I don't think they do anymore). This is partly, I think because more research has shown little benefit but also I suspect because even low-dose-aspirin has now been shown to have harmful side effects. Doctors may give a drug they think might work if there is no known risk from side effects, but the risk is now known and the benefit is not clear and may well be zero.
Always keep in mind that the vast majority of APL carriers never have a clot / develop APS - makes it very tricky for the doctors to in effect treat 100 people 99 of whom never needed treating.
Yes persistent positive beta 2 glycoprotein. I guess I just need to be vigilant and know what to look for with clots signs. Just wish I knew if my movement disorder is caused by aps
For strong positive or triple positive people HCQ is often used. Also if you have other stroke or heart attack risk factors such as high cholesterol or blood pressure it is more important to get those under control with drugs and lifestyle changes than to take anticoagulation for prevention of a first clot. Even after a clot with APS clot prevention focuses on controlling second strike factors like cholesterol, A1C and inflammation. Warfarin will not make you feel better. Contrary to a lot of the opinions on this site warfarin is only proven to prevent clots. Stories of it helping headache and other symptoms is antidotal and believed to be most likely a placebo effect.
I have the exact same findings - positive beta 2 glycoprotein IgM. I found out a few years after a normal, healthy pregnancy - I was 40 years old. I got pregnant again at 42, and had a miscarriage. Although this is common, especially at 42, they did blood work and discovered the beta2 glycoprotein IgM out of range. I was told if I wanted to pursue IVF, I would need heparin injections. I did not get pregnant again after that, and was not interested in IVF. No medication was prescribed, as the other part of the APS diagnosis is a clinical event
10 years later, I had a stroke caused by a blood clot. At first, it was attributed to APS, then the Neuro Dxed me w another rare disorder, carotid web - which causes the inner layer of the artery at the carotid junction in the neck to be loose and form a shelf, where clots can form. so, I had 2 rare diagnoses, and different treatments.
the carotid web was treated surgically, with a stent it is a diagnosis unrelated to APS, I did tons of research on APS and Carotid web to come to that decision. the rheumo had recommended Warfarin, but I consulted w an APS expert, who asked if I am symptomatic - and I have no APS symptoms, and told him about the stroke attributed to carotid web I was told some people have positive blood test for APS, but never have a clinical event I take one baby aspirin daily for my stent, but no Warfarin. It’s been 4 years since my stroke and I have had no further neurological incidents
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. I had a lifelong struggle ( as have most of us) with a diagnosis I am an adoptee and have zero family history information so I had to go to court to break the seal only to be told the file had been taken 
Going through (another) bad patch
Confused
Just diagnosed with APS
