Hello! I am new here and also new to the possibility of APS. I had an unprovoked DVT behind my knee in March and was put on Xeralto. Had anticoagulation studies drawn 3 months later and tested positive for LA and borderline for the cardiolipin and beta 2 glycoprotein. I am still on Xeralto and will have the follow up tests in a few months. My PCP consulted a hematologist (who recommended indefinite anticoagulation) but I have not been able to actually talk to a specialist yet. Would you recommend seeing a rheumatologist or a hematologist?
Thank you for this great safe space!
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Drgnfly
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The most important thing is that you see a Specialist of autoimmun illnesses who works with people like you and me daily. That Doctor knows how to treat you and what bloodtests to take and also give you a correct diagnose.
It is usually a Rheumatologist or a Hematologist.
As APS often goes hand in hand with other autoimmun illnesses it is good to find a Rheumatologist but a Hematologist may also know about APS as it is a blood-disease. I have both Doctors.
Best wishes and please tell us how it goes for you.
I would recommend a hematologist first. Then ask this Hematologist to suggest a Rheumatoligist that he/ she is used to working with.
The value of also having a Rheumatoligist as part of of a multi disciplinary team is that often APS will have other auto immune diseases join in the mix.
Remember, APS falls under a large umbrella of , “ Connective Tissue Disease.”
Under this category fall several subsets of connective tissue diseases. They can overlap with one another. A patient can have mild or severe cases of any of these. Examples would be Lupus SLE, Sjögren’s syndrome, Auto immune thyroiditis ( Hashimotos), scleroderma, Vasculitis, rheumatoid arthritis, and so on.
Very often we can have a ,” sprinkling of this and a hand full of that, or an entire bucket full of the other.” ( quote from my Rheumatoligist.)
Hydroxychloroquine is a very important medication, in that it has been shown to halt the progression of these additional auto immune diseases that like to join in from progressing by as much as 10 years according to my Rheumatoligist.
Another added benefit of hydroxychloroquine is it has a mild blood thinning quality, and can be be mildly helpful with stroke prevention.
It’s very important to have a Rheumatoligist knowledgeable about APS in your court.
It’s absolutely fine, but you Might need to be taken off xeralto.
I will tell you that if your Hematologist prefers you to stay on a NOAC, he or she would be wise to look at the benefit of Apixiban ( eliquis) over rivaroxaban ( xeralto.)
Apixiban has more ,” horsepower “ over rivaroxaban. ( my Hematologist was on the original team that studied and ran the clinical trial for rivaroxaban before it even had a name- it was still ,” alphabet soup...letters and numbers assigned to it.”). He told me this. Please tell your Hematologist the Astro APS ( Utah study for Apixiban) was not great.
My Specialist told me it was not controlled for correctly and it was under dosed. She said it was a bad trial from the get go.
If you have no arterial involvement, and only one DVT, and you feel perfect well with no symptoms on rivaroxaban, maybe you are one of the ones who... with close monitoring of your symptoms, could be on a NOAC, but I personally would think Apixiban would be the better bet. You can private message me for more details and you can share with your Hematologist, and I can give you details for my toe specialists who recommended and why - and he or she can look this up or even call them.
I have had Lupus and RA for many years and felt I was in remission. In spring of 2018 I became fatigued which was every day. I started experiencing pain again, especially in my legs. Cognitive problems included memory loss, a tipsy feeling like I had a glass of wine and wasn’t sharp, couldn’t remember words, couldn’t say what I wanted to and stuttering. I lost hearing in my left ear and developed livedo reticularis. My MRI show ischemic changes with hypersensitivity white matter changes and I had a positive LA.
Right now I see people separately who review each other but I do believe my rheumatologist will work with my neurologist more closely.
It is just a one step at a time process. Kelly put it best on another post that rarely do you walk in and a Dr says “I can diagnose you. You have this and that and here’s your treatment”. You have to be prepared to tell your story over and over until all of the pieces come together. But you HAVE to be your own advocate. This is your life! I was dismissed about my ear but my hearing loss was significant and a key to figuring this out. You have to be prepared to be thorough, write things down and understand what’s happening to you.
Hi, you have had some great advice from KellyInTexas and do make sure as you go through any rounds of testing that they look at your Thyroid, vit D, B12, Ferritin and Folate as if any of these are at the wrong level, it can make you feel a lot worse. Myself and family are lucky enough to have both a Haematologist and a Rheumatologist. As well as the charity website, this is also a good read: the-rheumatologist.org/arti... MaryF
Such good information. Thank you. My thyroid is actually a little high (has been for a few years) and my doctor said to keep an eye on it. I am now starting to recognize several symptoms over the past few years that are most likely related to this. Looking forward to finding someone who listens to me.
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