APS symptoms?

[Aster1]

Hi all, I am just wondering if you could help me identify the main symptoms of APS please. I have an appointment with my rheumatologist on Nov 10th and I really want him to start testing me for APS. I suffer from horrendous brain fog, I get lots of numbness and funny feelings around my face and have been tested a few times for PE as my doctor was concerned about symptoms I was showing. My memory is terrible and I am constantly exhausted. I have SLE and am on plaquenil (hydroxychloroquine). What are the primary blood tests for APS? Who is responsible for these tests, a haematologist or rheumatologist or neurologist? Sorry for all the questions. Thanks in advance.

[Manofmendip]

Hello and welcome.

Have a look nhs.uk/Conditions/Hughes-sy...

Dave

[MaryF Administrator]

Hi here are the symptoms and the blood tests: Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

Do them at the hospital as the samples taken are time sensitive, here are the symptoms:

APS can cause both low-grade symptoms and potentially fatal events as a result of blood clots.

In pregnancy, APS is the most common, potentially treatable cause of recurrent miscarriage, and is also associated with other complications such as pre-eclampsia, low weight babies and stillbirth.

Some people are affected by symptoms more than others while others simply have the antiphospholipid antibodies (aPL) in their blood but do not develop any blood clots, experience pregnancy complications or display any symptoms at all. As of yet, we simply don’t know the reason why these anomalies exist because so much research still needs to be carried out.

The typical low-grade symptoms of APS are:

headache and migraine

memory problems

dizziness and balance difficulties

visual disturbances

blotchy skin (livedo reticularis)

arthralgia

fatigue

The common acute events caused by APS are:

thrombosis – DVTs

strokes and mini-strokes (TIAs - Transient Ischaemic Attacks)

heart attacks

pulmonary emboli (blood clots on the lung)

recurrent miscarriages

As APS is a blood disorder and blood flows throughout the entire body, nearly any organ can be affected. Consequently, the brain, eyes, ears, lungs, heart, kidneys, liver, bowel, skin, nails, bones and joints can potentially all be affected to varying degrees.

Please also get your vitamin D, B12 and Iron tested plus your thyroid as this can make things worse also. MaryF

[NeilNicholas01 in reply to MaryF]

Hi Mary

You mentioned that the blood tests are time sensitive. I have waited almost 3 months for a 'third' blood test result to come back (the first two were positive - but because the second test was done 2 days inside the testing window the haematologist decided to test for a third time - it's now come back as a negative). I'm wondering if a time delay in testing could have caused this result.

Also, GP not prepared to refer me to APS specialist as he is happy with the haematologist looking after me. Any advice?

Many Thanks

[MaryF Administrator in reply to NeilNicholas01]

The advice we give is tests should be done if possible, unless the courier is very on time from GP surgery, at the hospital. If samples are left lying around it does have an impact on the result. The GP does need to refer you to a dedicated Hughes Syndrome/APS specialist. Can you take an advocate along with you and write to the practice manager first, this could be your most trusted friend, relative, neighbour or colleague etc. Failing that, take all your blood results along, printed out from surgery and pay for a one off appointment with a private consultant appointment. I know this is annoying but some of us have had to do this to get our care back on track with the NHS. However perhaps another push with the GP first.

[Lure2]

I hope your Rheumatologist knows APS very well. That is very important for us to have an Expert on our illness. There are very few Doctors specialized on APS and also Rheumatologists (even if APS is a rheumatological illness) do not know much of this rather new and rare illness. If you are lucky you have got an Expert. If not look for someone else.

If you have high bloodpressure please keep it normal and not too high. As you have got ev PEs

Best wishes from Kerstin in Stockholm