Need some help here: APS is not widely... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Need some help here

turkeyfalcon
turkeyfalcon

APS is not widely known here in Canada. My rheumatologist basically told me that until I have a stroke or clot not to worry about it.

I have an appointment with a hematologist tomorrow and I want to go prepared. I have had all three of the tests done. The Beta 2, and Lupus Anticoagulant come back negative. The anti-cardiolipin has come back positive three times (41.2, 58, 38).

I have taken it upon myself to take a baby aspirin each day. I have really nasty headaches and terrible muscle and joint pain, especially in one hip. My rheumatologist told me to do yoga. I am of normal weight and have had thyroid cancer, so my thyroid levels are under control.

My question is what to say to the hematologist when he says my blood levels are only slightly off, that I don’t need medication because I only tested positive for one out of three tests.

Thanks

8 Replies

I do not know where you live.

I also wonder if the baby-Aspirin helped with your neurological symptoms . Do you only have headache?

Hope your Hematologist is knowledable in APS. In that case and if you have relatives with the same symptoms (could also be dizziness, doublevison, loosing the vision in one eye, severe balance-issues for ex) he will perhaps be willing to put you on a trial of LMW Heparin to see if you feel better.

Best wishes

MaryF
MaryFAdministrator

Hello and welcome, I am enclosing our charity website here: ghic.world/ On this website you will find some specialists in Canada. It it is pretty vital that you have a medical consultant who fully understands this condition not half understands it or is prepared to learn more. Just passing one of the tests does not indicate that you don't have much of a problem, hip problems can indicate more than just plain old arthritis, as Professor G Hughes often states, the hip joint requires a large supply of blood and is sometimes affected by clotting or micro clotting.

It is difficult at times for medical staff to think of prescribing anticoagulation if you have not had an actual clot, have you had a scan of your hip? Is the Aspirin making a difference, it certainly does to me, I am on two a day, one in the morning 75 mg and one in the evening, always on a full stomach. Also it is important to look regularly at your Thyroid levels, beyond just the TSH test, and also to look at where you are with your B12, Iron and vitamin D levels.

I hope you manage to get some good and sensible help with this,

MaryF

viv112
viv112 in reply to MaryF

Hi, I was diagnosed 10 years ago and also have not had a clot or stroke. My rheumatologist advised me that one baby aspirin was sufficient and I would not benefit from taking a larger dose. So just wondering why you take two?

MaryF
MaryFAdministrator in reply to viv112

It was just decided that I needed two, i have multiple other conditions, I feel better on two, so I can't advise you on your own personal case, most take only one, but I am not on any anticoagulation, but other medications. MaryF

I was diagnosed in 2001 after a series of high cardiolipins. This was before the beata 2 was available. And I have never tested positive on the beata 2. But my migraines, mini strokes and panic attacks stopped after I went on warfarin. And have never returned.

I have taken 150mg aspirin a day for more than 20 years with no clotting problems since an earlier miscarriage. Always go for the enteric coated tablets as they are kinder to your stomach if taking long term

You only need to be positive on one of the three tests. There is not yet any one test that everybody with APS will test positive on. So testing positive on ACA is perfectly acceptable. It’s not a good idea to leave you until you have a clot as that way you might have a stroke or a heart attack. But equally they won’t want to give you lots of anticoagulation as you may get a bleed that way.

As you are having debilitating APS symptoms then I would agree with Lure2 and suggest you ask for a trial of heparin. If they absolutely refuse ask if they will add in clopidogrel as well as your aspirin to see if that will help.

My cousin is Canadian and he was diagnosed about 20 years ago following a TIA while playing sport. He actually got diagnosed much more easily than I did in the UK. So don’t despair, there are consultants out there who know APS.

Oh, it occurs to me that the reason I got diagnosed with APS despite no obvious clot was because I had an MRI of my brain and it showed lesions meaning I had clotted. I had similar symptoms to you, really nasty migraine for several days a week as well as joint pain and fatigue. You could try asking for a brain scan. I went onto have a few noticeable TIAs before being given warfarin (Coumadin).

I am in a similar position to you. My rheumatologist and neurologist agree that anti-coagulation is not warranted unless you have a clot. My understanding is that these antibodies and risk are related to titre. If you have one antibody and low titre, that is great. They have done a lot of research since I was found to have this antibody. Even aspirin, which I was out on before the reearch was conclusive, is not necessary. Aspirin can also cause serious bleeds. For non-thrombotic symptoms such as migraines and light-headed you might want to see a neurologist. I am not symptom-free but am better with the addition of medication to the aspirin. Please don’t take aspirin without talking to your doctor!

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