Hello everyone. I’m new here. I went to see a private rheumatologist after years of not being “well” in November. This was after I went to the GP with worsening Raynauds. An antibody test showed Positive ANA. Went to rheumatologist and been having tests for other stuff including Raynauds testing. Raynauds came back as secondary. My rheumatologist then diagnosed Undetermined Connective Tissue Disease. He thinks it will probably progress to Lupus or similar. I get facial flushing and rash.
I also have hashimotos dx in 2008.
He recommended I start HCQ immediately.
In the last appt he said he’d seen a positive acl antibody and would need to repeat the test. I didn’t really know why. I asked for results of the second test and it showed a second weak positive (19.7) IGg. So I now have two positives.
I have an appointment to discuss the results this week.
My question is - do I have APS?
I know it might sound stupid but I can’t work it out and my mind is in pure overdrive.
Thanks you those who have read to end!! 🙂
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I understand you may be feeling confused or even anxious but only your doctor can make a diagnosis. Autoimmune diseases are very difficult to diagnose.
The tests performed were not specifically for APS. They are for connective tissue diseases. The ANA tests don’t necessarily confirm anything on their own. There are people with positive ANAs but are perfectly healthy.
You may have to wait for a specific diagnosis. It took Dr Graham RV Hughes 18 months to confirm my diagnosis of SLE with overlapping dermato-myositis.
To test for APS demands complicated clotting tests for the “sticky blood.”
The most important thing is your rheumatologist is treating you with hydroxychloroquine (Plaquenil) for some kind of connective tissue disease.
Only your doctor can make a diagnosis and you shouldn’t listen to anyone who gives a diagnosis, not even Dr Google!
You have only mentioned the ANA (Antinuclear Antibody) Test
An ANA test is a blood test that looks for antinuclear antibodies in your blood. Antibodies are proteins that your immune system makes to fight foreign substances, such as viruses and bacteria. But an antinuclear antibody attacks your own healthy cells instead. It's called "antinuclear" because it targets the nucleus (center) of the cells.
It's normal to have a few antinuclear antibodies in your blood. But a large number may be a sign of an autoimmune disorder. If you have an autoimmune disorder, your immune system attacks the cells of your organs and tissues by mistake.
What is it used for?
An ANA test is used to help diagnose autoimmune disorders, such as:
Systemic lupus erythematosus (SLE), the most common type of lupus. Lupus is a chronic (long-lasting) disease that affects many parts of the body, including the joints, skin, heart, lungs, blood vessels, kidneys, and brain.
Rheumatoid arthritis, a condition that mostly affects joints, causing pain and swelling often in the wrists, hands, and feet.
Scleroderma, a rare disease that may affect the skin, blood vessels, and organs.
Sjögren's syndrome, a rare disease that affects the glands that make tears and saliva (spit) and other parts of the body.
Addison Disease, which affects your adrenal glands, causing fatigue and weakness.
Autoimmune hepatitis, which causes swelling in your liver.
As you can see, the ANA does not test for APS. To test for APS, blood clotting tests are necessary.
Laboratory diagnosis of APS relies on the demonstration of a positive test for antiphospholipid antibodies (aPL). In clinical practice, the gold standard tests are those that detect anticardiolipin antibodies (aCL) and/or the lupus anticoagulant (LA). The lupus anticoagulant is NOT a test for SLE (lupus) and it's name confuses patients and doctors alike. It is a complicated clotting test. If the blood is "sticky", the blood's consistency means it could cause blood clots or strokes.
Many patients with SLE also have APS. But, many patients only have APS on it's own.
I hope this helps you understand the difference between ANA tests and tests for APS, the antiphospholipid antibody test.
Do you also belong to Health Unlocked Lupus UK group.
I have strong ANA and have a diagnosis of UCTD Undifferentiated Connective Tissue Disorder as did not meet requirements of any of the latest specific autoimmune criteria.
Some of my antiphospholipid results have been borderline, but they were only done once so I have not really got much of a feel for the situation and whether if repeated more I'd have the 'duplicated positives' as required for antiphophospholipid syndrome. It has been hard getting the tests done once..
It sounds like you have two positives for one of the tests, (IgG aCL?)
Personally I noticed a change in my blood clotting after having covid in March 2020, early in the pandemic.
Lots of people on the Lupus UK forum have UCTD.
You could ask the same question there.
I am taking hydroxychoroquine and it has helped alot. I have also needed prednisolone recently.
APS? Maybe. I certainly can not say. I might suggest that your accumulating diagnoses seems to point to exposure to an undiagnosed trigger. -- possibly a food. I spent the first half of my life constantly sick. I was eventually diagnosed with APS. THEN a friend nagged me into trying a gluten free diet -- and everything changed. Like that! At age 45 I had more energy then I had at age 25. THEN, some years later, a functional medicine doc was suspicious about a blood marker that was a high normal. I was urged to try a dietician supervised elimination diet. And WOW. Another food sensitivity is revealed: cashews. Now, in my 60s, I still have more energy than in my 20s! Elimination diets are hard to follow. But the sensitivities revealed can make a huge impact on day to day well being. People still ask me how I can turn my back on gluten based foods and why I am so vigilent; "That croissant looks delicious to you, but to me it looks like poison!"
One final note: Dr. Hughes has noted a corrolation between gluten sensitivity and APS. Even if you don't try a dietician- supervised eliminaion diet, you might just turn to your back on gluten for a week or so and see how you feel!
I see that you have 2 weak positive ACL tests. This means that you pass the requirement for positive APS blood tests. However, the definition of APS also says that you need clinical evidence of blood clots or miscarriages before you can be diagnosed with the full syndrome.
Lupus sufferers can often have positive blood tests for APS but only about half of those with positive bloods have the full syndrome.
There are 2 other blood tests for APS, do you know if you were tested on these too? It’s only necessary to be positive on one of the tests for a diagnosis but it is a good idea to do all 3 tests as being positive on all 3 might mean different treatment.
Your consultant will go through your medical history to look at possible clotting etc and decide if you have APS or are just antiphospholipid antibody positive. And whether or not you need treatment for APS in particular.
HCQ will help with several autoimmune diseases especially lupus but they are also using it for APS patients too.
I hope that helps. I’m pleased you have an appointment this week so I hope you can find somethings to take your mind off APS or not APS. I can still remember the worry despite being diagnosed over 20 years ago now. If you want to look into APS before your appointment the APS Support UK is a reliable site. Treat yourself gently and try to find some way to relax even if it’s just a nice bath or you could try some meditation to help. There is a good app called Calm which in the free bits does have a set of “lessons” to teach you and they are only 10minutes long.
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