On the one hand, I feel very fortunate to know that I have the APL antibodies (just tested as persistent at 12 weeks) before anything dire has happened! On the other hand, being triple-positive at high levels and with bad chronic migraine including stroke-like symptoms makes me feel that I am probably at high risk for a clotting event. I have already been taking low-dose aspirin for years because of higher stroke risk due to migraine with aura. Is there anything else I can be doing in terms of prevention? My first hematologist appointment is in a month, anything in particular I should be asking?
Thanks. And thanks for being here.
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queen-adjacent
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Hi, good to hear from you and thank you for sharing your experiences!
First question, have you had any MRIs to check your brain for stroke-like events or evidence on your brain stem? If not then might be worth asking if you can get everything fully checked.
I’d also ask what, if any, other tests or checks they will do in conjunction with your APS diagnosis.
And I’d also ask what the follow up will be, eg an annual check or something like that. If your haematologist is good then hopefully they’ll give you lots of attention as it’s quite a new and relatively rare condition and all the ones I’ve spoken to are trying to find out as much as they can about it. Which I take to be a good thing!
But most of all, I wouldn’t worry. APS is very treatable, and if they do prescribe warfarin it just takes a bit of time to get your level right.
There are some great threads on here with a heap of information about managing the condition, testing, diet…all sorts.
On diet…if they put you on warfarin then that’s one of your biggest challenges in terms of maintaining a steady vitamin K intake. Don’t stop eating vitamin k, but you have to be super consistent on when you have it and how much (broccoli and sprouts etc).
Be sure to come back here and let us know how you get on, and welcome to the exclusive APS club
Your story certainly resonates with me! -as I'm sure it does with many of us on this site. Diagnosis is, IMHO, a good 80% of the struggle! You're near the finish line! Consult with a experienced hematologist and find the treatment right for you and you'll be running through that finish line tape!
You should try to get to a Specialist of this rare illness as soon as possible. We very often have microclots and microembolies and they are difficult to see on a normal Scan. I wonder if this Hematologist knows APS very good and has worked with autoimmun illnesses like APS, SLE, Sjögrens, RA etc. Exstremely important that you get perhaps more than low-dose Aspirin if you are triple positive like me with also high titres for years.
I had a lot of neurological symptoms to start with. I had TIAs like Amaurosis fugax, could not feel the right side of my body included the right side of my tongue. As soon as I had started Warfarin I felt much better but not quite good until I had got a Hematologist who understood that I needed a steady INR over around 3.5 to 4.0.
Read "Sticky Blood Explained" by Kay Thackray, it it is still possible to get it in USA and England. I am from Sweden and bought all APS-books several years ago.
Try to read and learn as much you can about your illness as there are so very few Doctors who know what it is and they think we will bleed from this illness very easily. "We do not bleed from this illness but clot!!" (Of course it is possible to bleed, but much more often we clot).I have learnt that several years ago when I talked to so many APS-sufferers here and those words prof Graham Hughes has told us all). This illness is also called "Hughes Syndrome".
Hi, do write out your medical history in bullet points, also medication in same style and also symptoms, it will help with the appointment, in terms of the questions you would like to ask. It is always a good idea to get your blood tested to look at Thyroid, B12, Folate, and vitamin D as all these if out of kilter can affect most autoimmune diseases. MaryF
Same situation here. I used to ha e severe migrains. Ice packs (Core Products are the best) works well for me to being the headache down. Also, muscle relaxants (Soma) help considerably. To help your risk, I walk. It is a low cardio workout but significantly reduces the risk of clots. Best wishes.
Looks like you ha e received great advice. I ha e APS too. Over the years I ha e taken low dose aspirin and during pregnancy and after major surgery I took Lovenox shots to stop any blood clots. Do not take Eliquis if you are APS positive. It is contraindicated, but it is shocking how many doctors do not know this. Regarding the migraines, caffeine makes my migraines so much worse! Also, to mamage the migrains I ha e found ice packs (by Core Products) and I take a muscle relaxants called Soma when I feel one coming on and it stops the progression for me. Once I got through menopause my migraines have subsided significantly. Also, I found a direct correlation between the migraines and higher blood pressure. Walking is a game changer with APS and it really helps reduce your risk of clots and stroke. Moving around often is key. Best wishes.
I do not know where you reside, but in the US there is a black box warning by our US Food & Drug Administration that strictly warns doctors that Eliquis is contraindicated in patients with APS. The problem is that there is a correlation between blood clots forming when we take Eliquis. Please research this and get off Eliquis ASAP. You can find the research online.
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