Hi there,
I’m wondering if anyone out there has beta2 glycoproteins antibody ALONE being positive plus recurrent miscarriages but has NO history of thrombosis ?
I have recently seen another rheumatologist who is now questioning my diagnosis.
Look forward to hearing from anyone.
Many thanks in advance!
HI, is this rheumatologist up to speed with Hughes Syndrome/APS? I have passed two out of the two tests regularly, but for many years was seronegative, and for Lupus, not any more I pass them all regularly. If you regular testing is showing a positive result, there is the main clue for this doctor. I have not had a clot for years, but that does not mean I don't have it anymore. MaryF
I'm sorry to hear about your miscarriages .I'm triple positive never had a clot or miscarriage but the prof. put me on Tinzaparin injections anyway.all the best Elfie
Hi Elfie,
I think you have been lucky to get a Specialist of APS who really understands our illness.
I am triplepositive with high titres since several years but we have not found a visible "clot" or "mini-thromboses" on me. No miscarriage either.
Migraine can be a symptom of APS for ex and you may have had micro-clots or micro-emboli without knowing it. If you are not treated you will see the consequences later on.
I have today two leaking heartvalves and pulmonary hypertension but are since several years now treated with anticoagulation (Warfarin today with an INR of 4.0).
My best wishes to you from a hot and "burning" Sweden
Hi kerstin yes our team at the leeds hospital are on the ball .I just had an appointment and they said my beta 2 antibodies and acl antibodies have dissapeared that only leaves the lupus anticoagulant but they wont take the risk and stop the tinzaparin. All the best Elfie. Ps. Its very hot here too walking with umbrella up get some funny looks ha ha.
Thank you all for your replies.
I guess my diagnosis was queried again as I have had another miscarriage despite clexane , aspirin, plaquenil and prednisolone.
Does it matter what sort of level your antibody is ?
My beta2gp ab level is slowly creeping up from 17 to 30 over the past ~9 months. Normal being less than 8 with this assay.
Does it mean much do you know?
Many thanks again in advance !
I have the beta2 and severe migraine with history of unusual aura / neuro symptoms (currently improved from a few years ago) but no thrombosis or miscarriage. So it's proving very hard to actually get a firm diagnosis, the argument seems to be that having the antibodies doesn't mean actually having 'the syndrome'.
It's extremely stressful.
Hi Frodo,
Very difficult to diagnose our illness. Remember the antibodies can go up an down during time. Mine have always been high but I think that the levels are not too important as the symptoms are also very important and we may have micro-clots or micro-emboli and they do not show up on an ordinary Scan.
Kerstin
Hi Kerstin,
I've read on here about the micro clots, but where's the medical evidence if they don't show on scans? I deduced from my symptoms several years ago I have APS, nobody believed me, now the antibodies seem to say I have, but no thrombosis, stroke or miscarriage so apparently I don't have it??
Re scans, I met an old neighbour recently who had had a full stroke and even that didn't show on a scan.
Frodo,
I know you are asking Kerstin, and she will answer here also.
I have ,”low and moderate “ antibodies. Additionally my titer levels go in and out of sero negative/ sero positive status. This does NOT meet the current Sidney ( revised myakis or Sapporo criteria of 2006.) I did, however, test positive twice in a row 12 weeks apart. Then one week later I had a huge thrombosis. However, in the hospital, my titers had gone sero negative ! This led my hospital Hematologist to doubt my diagnosis. ( but I did not know he was thinking this at the time.) He wanted to only leave me on warfarin for 6 months, which I thought at the time sounded fine. ( I knew nothing of APS- I just knew my Rheumatoligist suspected it, had run a couple of tests- I didn’t know what all he was running. then I suddenly clotted! No time to learn anything.)
I did not do well on warfarin at an INR of 2.5-2.8. I felt terrible- I had no idea what the problem was. I was his first APS patient. He suggested sending me to a specialist. I chose HSS in NYC because our daughter is very near there at university- we have a home in Princeton. I saw the big USA guru. He told me I did not have APS. I did not meet the criteria for Persistently HIGH titers which he said would be at least 40, but he preferred 70+. I was very happy to hear this news! What is it then? How can you help me?
... He couldn’t. He had no idea. He couldn’t explain any of the classic symptoms, or my mother’s clotting and subsequent death.
The trouble was... he wrote up my clot was provoked by a long haul flight to France. That was incorrect. The stem was hurting a few days prior but I noticed it was worse in flight.
He recommended I come off all anticoagulation. My Texas Hematologist was only too happy to oblige. And now it’s in my notes. It follows me in my charts.
I my GP continued my warfarin until I could see Dr Hughes / Prof. Natasha Jordan at the London Lupus centre about a month later.
I was diagnosed with absolute no questions asked APS/ Hughes. My INR was raised to 3.5-4.0 and heparin added for bridging.
I’ve subsequently gone sero neg/ sero positive- all the time!
Now my INR has been raised to 4.0-4.2
( I’ve since made 5 new dvt’s)
A seasoned clinician in many cross disciplines who see many many APS cases will understand the value of evaluating the patient as a “whole:”
1. Hematologist. Are there other clotting disorders? Factor V Leiden? Protein c / s deficiencies? I have none.
2. Rheumatoligist: family history/ patient history/ . Look for “ fellow travelers” as Professor Hughes calls the all too often acvompanying auto immune diseases of APS: Lupus, Sjogrins, and Hashimotos/ lazy thyroid.
3. Other fields of specialization as disease process warrants: could be neurology, cardiology, etc.
A good answer from Kelly!
This is a tricky illness and the causes are not always known.
What we (and first of all I) have found is that the symptoms from left sided otolitdamage (ear) which was caused by microemboli (found by the best Specialist we have in Sweden on balance-disorders) like the other neurological symtoms (amorosis fugax, doublevision, suddenly falling to the ground ) was better on Aspirin and with Warfarin PRACTICALLY GONE. I must however keep my INR at 4.0 which is not easy with a Coaguchek-machine that shows quite a higher number than the real blood-value in the vein. Lately is has not even showed a constant difference!)
But I test at the hospital whenever I want to for a correct number. We have tested another machine here in Sweden and that one is better so far.
What sort of anticoagulation are you on today?
We will now try to do a new MRI with contrast which was not used the other time several years ago. My memory is not quite ok today. If the tiny emboli or clots should be seen they must use MRI with contrast I have learnt. Also the Specialists can see on the symptoms like for ex "Valve Desease" which is a rare symptom of APS based on thrombosis. I have that.
That is all I can say. It is really a tricky illness (very rare and not so old) and the Specialists are still learning.
Kerstin
Thank you all for your sharing!
Much appreciate it.
It sure is a challenging and frustrating diagnosis / condition ...
All the very best to you all.
🙏🏼🙏🏼🙏🏼
See to it that they will not stop your anticoagulation-treatment. Also important to have a Specialist who knows autoimmun illnesses very well. So few do. Your new Rheumatolgist is perhaps not the right Specialist if he or she even knows about APS!?
Be careful and let us know how it goes for you please!
Kerstin
65 year old with only high Beta -2 IGA level. ( 153 ). No miscarriages though- DVT’s . Wishing you the best!
Autonomic Dysfunction?
MS like symptoms
Bovine colostrum
re: Hot pulling sensation on my right leg around the knee area
APS and Addison's?
