How often do you get tested for your antibody levels?

[travelnut]

Do most clinics do these tests just for the diagnosis and then don't repeat again? The reason I ask is I queried whether my 'episodes' of bad health could be related to my antibody levels being raised. I was told no as my antibody levels were stable. I asked when the last test was carried out and after looking on the computer system they said the last one was when I had my second positive test result and my APS was confirmed. That was about 2 years ago.

[kathyD64]

I was thinking exactly the same as you - there seems to be no routine check of antibodies i had mine done in 2011 when they were significantly raised & i was very unwell but prior was 2007 when i had major fatigue issues then and was 1995 before then...

good question & perhaps could be a poll to see if units do check them routinely or only if presented with medical issues kathy x

[travelnut in reply to kathyD64]

I am sure there are big cost issues with routine testing but in mind unless the antibody levels are tested on a relatively regular basis how do we know that any symptoms we are getting isn't down to the antibody levels altering?

I think one of the issues is Kathy that a lot of people don't know what the drs are testing for when they take bloods. I know I don't sometimes and I don't get any of the results of the tests either. They just let me know if something isn't right.

[Storky]

I seem to have mine tested every time I go to St T's which is every 6 months. I think its pretty routine. Not sure what they are looking for or if its just to monitor.

[travelnut in reply to Storky]

My blood is tested every time I go to St T's as well. I thought that this included monitoring of the antibody levels but it was only the last visit that I found out that was not the case. I just assumed that they were being measured but they weren't. Now that may not be a big deal in terms of impact on my health and the APS but I just don't know.

[Hilda_G]

I saw a haematologist this morning, he said that they don't routinely repeat the tests. I am largely symptom free, so I imagine there is little point for me anyway! (This was at Leicester Royal Infirmary)

Emma

[olleberj]

Several years after being diagnosed with Primary APS, I asked to have the antibody levels checked again, stating that I hoped that perhaps the levels would have gone down. The doctor sort of laughed and said, "Wouldn't that be wonderful," implying that it's not likely that they would go away of their own accord. To satisfy me, she did the tests and found the levels were still very high, nearly ten years post original diagnosis. I doubt they will test them again unless I ask.

To me, it seems the question is, would you change the treatment regimen if the levels changed? I don't think so, as many people with APS symptoms don't consistently show high levels of the antibodies.

[viv112]

Hi

I see the consultant rheumatologist at my local hospital (Wrexham) every 6 months and I have blood tests every time I visit, and these include the test for antiphospholipid antibodies. When I was first referred I was seen and tested every 3 months. My IgG antibodies are negative (less than 10) but my IgM antibodies are positive. Last November my IgM antibodies tested negative for the first time in 3 years but they are now back to positive at 28.1 (normal less than 16). My last 5 results have been 44.6,36.1,33.1,negative, and now 28.1. My weakly positive lupus anticoagulant remains the same. My rheumatologist is interested in antiphospholipid syndrome and is interested to see the results and so am I, so I keep having the tests, although they are not essential as I have been feeling well ever since I started taking aspirin 3 years ago. My rheumatologist says she has patients who have anticardiolipin antibodies in hundreds but they remain well.

[InSpain]

Hi I live in Spain and have regular check ups with my Rheumatologist every 4 months. Here I have a full range of blood tests before each appointment. When I lived in the UK I did before my 6 monthly appointments at St Thomas's too.