Hi,
I'm new here, I mainly lurk in the lupus group 😂
Found today, accidentally, that I have tested 'low positive' b2gp1 twice and three months apart. The Dr who documented this is aware that I had a history of early miscarriage until a gynaecologist told me to try taking aspirin as soon as I found out I was pregnant and went on to have successful pregnancies. Does this low positive mean APS or are there other blood tests that would need to be positive?
Thanks xx
I am similar to you in that I have known about the Antiphospholipid antibodies because I have an underling autoimmune disease. Years ago, before the research was in, I was put on aspirin. I have been kept on it because of other stroke and heart disease risks. So I think your doctors are making the best decision in view of current research and your particular history and risks. Do you have any neurological symptoms? Because I have never had a clot, my doctors do not use the term APS, but aCL positive. Others on here may know more about how Professor Hughes and other U.K. doctors describe this group. The main thing is you were identified and treated as I have been. Sounds like you are doing well.
I'm not being treated with anything, should I be? Unless my uctd meds cover it? Yes I've had neuro issues but mris are always clear. Could my facial palsy be caused by this?
Thank you for your response 😊 it's all very confusing!
Maybe I was mistaken. Were you given aspirin during your pregnancies? Yes, it is confusing. There are many things they take into account. But you should ask about your neurological issues. Aspirin, seizure medication and anti-depressants can help. I think they are speculating that plaquenil may be protective, but the results of the studies are not in. Are you on that for UCTD? That is my diagnosis.
Yes I only took aspirin during pregnancy. I'm only recently diagnosed. Anti dsdna positive and fit the criteria for lupus and sjogrens. Plaquenil did nothing for me at all so I got switched to mycophenolate. I also take pregablin and sertraline. Been on a high dose of steroids for months but finally tapering down. I also possibly have interstitial lung disease but not had a ct to confirm yet. How long have you been diagnosed?
Xxx
35 years ago — before there was even an anti-cardiolipin test, just the false positive VDRL that suggested it. My young doctors laugh when I tell them my doctor had to send my blood to a researcher’s lab up the street (maybe a friend of Professor Hughes) to be tested. They have come a long way since then!
Hi and welcome, a lot of us are in several groups with our mix of diseases, some take a while to pass tests, I did even though I had several clots years ago, during my first pregnancy, some only pass one or two of the tests, I now regularly pass two out or three, same for my children. Please take a look at our charity website: ghic.world/ there are some specialists on the front section, also we have many under 'pinned posts; over on the right hand side of this forum. Make sure you you keep an eye on Thyroid, plus test for levels of vitamin D, B12, Folate and Ferritin as any of these being out of range will make you feel worse. MaryF
Thank you. My rheumatologist is a bit... Unhelpful sometimes. She thinks I have behcet's too but the test was negative - but she did the wrong test!
Thanks for the info I'll have a look. I'm just concerned about clots if I'm left untreated but at the same time I don't want medication I don't need.
I think I need to see her again soon and go armed with questions.
Xxx
If you are worried about not being properly medicated to prevent clots, I think Mary’s advice to see a APS specialist is the only way to know you are getting the best care. It will be worth it even you have to pay out of pocket to get peace of mind. I felt much more comfortable after hearing from a few experts.
There's no way I could afford it. I'm stuck with whom ever the NHS says I can see! X
The one thing I can tell you — hope it is helpful — is that lupus patients can have the antibodies but not have clots or can have only non-thrombotic symptoms. Some get aspirin and some do not, but I have been told by a rheumatologist, stroke specialist, and autoimmune neurologist that aspirin is not indicated unless there are other risk factors. Others here may be able to offer more insight. Controlling the other risk factors is very important — weight control, prevention of diabetes, blood pressure control and exercise. Some cardiologists are using statins for lupus patients to help prevent cardiovascular disease. One plus one does not equal two when it comes to strokes and heart attacks.
There is an excellent article under “pinned posts” here called “Differential Diagnosis of APS.” It is not easy to grasp it all — I will need to read it another five times — but it will give you a good overview of all the things that are taken into account and the multiple ways APS manifests. I think it will also help you to see how your doctors are trying to evaluate your whole picture before deciding on treatment. Are you allowed to request a referral to an NHS APS specialist?
Behçet's disease, an autoimmune condition, is common in the Middle East & Asia, consisting of mouth ulcers, genital sores, eye inflammation, arthritis & sometimes brain or spinal cord inflammation. It is rare in Europe & US, unless the family of origin is from the Middle East. Like SLE, it is partly genetic.
Which test did she do? Doctors looking toward a diagnosis of Behçet's disease may attempt to induce a pathergy reaction with a test known as a "Skin Prick Test". Pathergy is a skin condition in which a minor trauma such as a bump or bruise leads to the development of skin lesions or ulcers that may be resistant to healing. It is also important to note that, while a positive pathergy reaction helps to confirm a specific Behçet's disease diagnosis, a negative reaction does not invalidate a BD diagnosis, because the disease process has to be active at the time of the skin prick test to produce a pathergy reaction. Differences in positive/negative pathergy and severity of the reaction depend on disease activity, ethnicity, type of needle used for the prick test, among other factors.
UCTD is really an unhelpful "diagnosis"! In effect, it is a lupus variant condition, like MCTD & certainly Dr Hughes treats them as lupus. There is an obsession with respect to tests & doctors frequently err when the test is "negative" claiming the patient doesn't have x, y, z. It is only IF the patient is having a flare that the test is positive. Often, it is not, but this doesn't mean the patient doesn't have the condition. In SLE the situation is even worse. Doctors continue to claim that a patient doesn't have SLE if they do not have 4/11 "criteria"! But, this "criteria" was written as a "Classification" for patients in clinical studies and NOT to diagnose individual patients. Nevertheless, doctors continue to diagnose individuals based on a classification to ensure the same type of patient is used in clinical studies; and despite what was written by the authors of this classification system.
If a patient has a history of miscarriages, headaches, migraines, neurological symptoms, TIAs, strokes etc it should be obvious that these clinical symptoms are more important than a blood test! In terms of the antiphospholipid antibody, around 30-40% of lupus patients either test positive or have symptoms.
There is a great deal of information vis a viz lupus at LUpus Patients Understanding & Support (LUPUS)
Please contact me if you have any access problems as you will need to register to access information. I know this is a pain, but I have had 1 spammer (this week in fact via a Contact form) in the last 3 years!
With good wishes,
Ros
I've been confused at her reluctance to diagnose lupus as I have more than 4 criteria including high ana, positive anti dsdna and a long list of symptoms from the 11 criteria. The first rheumatologist I saw told me it was lupus. The second said uctd. I also was told I likely had ILD by the guy who did my lung function test, and I was on 60mg pred at the time, but I've been told she's not concerned about the results and continues to say I have no organ involvement. It's been very frustrating all round if I'm honest.
Xxx
Do confirmatory tests have to be positive for Hughes Syndrome?
Low positive antibodies so doctor won't treat
Translating concerns into action
Can low INR cause depression/mood swings/anxiety?
Tested Positive Will it Affect my INR?
