iNR: Hi! I first wanted to thank... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Uzoigwe
Uzoigwe

Hi! I first wanted to thank everyone on this forum, for educating me on APS. I had two positive blood tests - B2Gp1 IgM - seven years ago and I was not medicated. My other APS antibodies were WNL. This June - I had an unexpected stroke - which is odd at age 51 with no heart issues. I was given an APS diagnosis because the stroke initially was attributed to a clotting issue. I was retested for all the APS antibodies and again, my only positive was B2Gp1 IgM.

Then, it was discovered that I had a rare diagnosis of carotid web - which was causing 50% stenosis in my carotid artery. The CT image they took when they removed the clot after the stroke showed a clot sitting on the web - and in the follow up CT a month later it was gone. I was on high dose aspirin. The doctors thought the carotid web likely caused the stroke. I had a surgery - last week - to place a stent in my carotid artery and push the carotid web out of the way - as it is associated with recurrent strokes. I am on Plavix and aspirin for 3 months after the surgery, and then on baby aspirin daily for life because of the stent.

Where does this put me in terms of APS diagnosis? They have no way of knowing if a clotting disorder contributed to my stroke. My rheumotologist and hemotologist said to take high dose aspirin after

The stroke . They aren’t APS specialists.

They did an iNR test pre surgery - I was taking high dose aspirin and Plavix for 4 days -and my INR was 1 with a Prothombin Time of 13.2 seconds. I know nothing about INR results and hoping someone can offer some guidance. I am hoping to go to NY to see a specialist when it’s safer to fly - who knows when that will be. Any help, experience or knowledge is appreciated. 😀

19 Replies
oldestnewest

Hi,

I just want to say that an INR of 1 is what everyone has without eating anticoagulation drugs.

If you take Warfarin you will have a higher INR but not with antiplatelets.

Hope you can get a Specialist soon as I think you might need anticoagulation perhaps, having had a stroke and Beta-2-Glycoprotein 1, was it twice (?) Where do you live in the US?

Uzoigwe
Uzoigwe in reply to Lure2

Thank you for your knowledge! I live in the SF Bay Area. My stroke was caused by a rare carotid web - part of FMD (fibromucular dysplasia). I just had a procedure to put a stent in my carotid artery and need to be on heavy anti-platelets because of it. Yes, I need a specialist to determine diagnosis because was my stroke was not caused primarily by APS, and to determine if I need treatment and what that should be.

Star13
Star13 in reply to Uzoigwe

Other than your Stroke, do you or have you had any other symptoms of APS in the last 7 years and what made them test you for it then? APS antibodies can be present without having the syndrome, which is normally diagnosed not just with antibodies but with other symptoms and medical history.

Uzoigwe
Uzoigwe in reply to Star13

I have had no symptoms in 7 years - actually kind of forgot about the dx. 11 years ago I had a baby - natural pregnancy - full term and healthy pregnancy - I gave birth age 40.

They tested 7 years ago because I went to a consult for an egg donor - as I wanted to have another baby and had a miscarriage at 7 weeks. The hematologist later told me to be cussed by a clot - miscarriage would occur later than 10 weeks. But, they want to be sure that you can carry the child as egg

Donor is so expensive - so they tested me for everything possible that causes miscarriage. they told me if I wanted to pursue egg donor pregnancy I would be on heparin because of my risk. I decided not to do it - for many reasons. I consulted w a friend who was a hematologist at the time - who said I was at risk for ApS but not diagnosed because I didn’t have a clotting event and also didn’t have any symptoms.

This stroke I had in June- initially thought to be caused by APS - they found out caused by another rare dx - carotid web. So...now I am back where I started: Positive B2Gp1 IgM and no other positive antibodies - no symptoms - and a clotting event with a completely different cause. No one can say whether a tendency to clot attributed to this - as carotid webs on their own cause recurrent strokes. I just had a stent placed to address the carotid web. Will be on baby aspirin for life - not sure if I will need more meds. My docs aren’t experienced w APS.

Star13
Star13 in reply to Uzoigwe

Here is some info. researchgate.net/publicatio...

Your plans to seek an APS specialist are wise.

Uzoigwe
Uzoigwe in reply to Star13

Thank you very much!

MaryF
MaryFAdministrator in reply to Uzoigwe

It really is essential you see a specialist with full working knowledge of this disease, otherwise you may not get the correct diagnosis. MaryF

ghicworld.org/medical-advis... Some from the charity.

MaryF

Uzoigwe
Uzoigwe in reply to MaryF

Thank you, Mary! And everyone ! Yes - I have contacted Dr Doruk Erkan from this list and he is very knowledgeable. I don’t feel safe flying with Coronavirus - so it will be a while before I can see him. This is very hard for me as I have been in good health up until this unexpected stroke in June. Thanks for your advice, everyone!

MaryF
MaryFAdministrator in reply to Uzoigwe

Well done on your progress with all of this. MaryF

Uzoigwe
Uzoigwe in reply to Star13

Thank you. A team of docs determined my stroke was caused by carotid web - not APS. The question is did APS contribute to the clot ? radiopaedia.org/articles/ca...

I don’t want to change my life going on anti coagulants if I don’t need to. Thank you for your help.

Fibromuacular dysplasia causes tortuous blood vessels esp of the carotid so that makes sense in regard to it being a high risk for stroke. However, vascular injury and antibodies to the cells in the lining of your blood vessels is what causes APS. If you’ve had a stroke in the setting of a twice positive B2GP IgM more than 12 weeks apart, I’d say that you have APS.

I’d implore you to find an APS specialist or even just a really good hematologist. I have some physician friends that work at UCSF if you’d like me to ask around. I think you need to be warfarin but I’m obviously not your doctor. I think APS + FMD is not a good combination and dual antiplatelet therapy really doesn’t seem like it’s enough IMO.

Let me know if you want me to ask around. I’m happy to help. Hope you find answers soon! ❤️

Uzoigwe
Uzoigwe in reply to Jmiller623

Thank you! FMD caused a carotid web - actually my arteries are pretty straight - have seen multiple CT scans. A carotid web - part of FMD- is like a shelf in your artery that caused 50% stenosis- and clots can develop because of it. They cause recurrent strokes. They are very rare - and thought to be congenital. This stroke was an arterial event, caused by the carotid web. APS May have been a contributing factor, but no way to prove that since carotid webs cause recurrent strokes on their own.

I had a stent placed last week to treat it the carotid web. The doctors - a team of neurologist and and vascular doctors - saw a clot sitting on the web and think it caused my stroke. This is common with carotid web diagnosis.

I have had these positive blood tests without incident for seven years - then the stroke this June. I have no symptoms of APS. Since my stroke, I am on high dose aspirin (hematologist recommended) and now also Plavix because of the stent surgery.

Diagnosis is not so simple - I wish it was. My current medical team recommended Aspirin for treatment of APS - before they knew about the Carotid web diagnosis. It’s very confusing because they are both rare dx es, and the neuros don’t know much about ApS, and the rheumo/hemo doesn’t know about carotid web / which is part of FMD.

I called UCSF Lupus clinic and they don’t have anyone specializing in APS. Please let me know if you hear of anyone! I really am looking for an expert in research and dx /

Tx of APS. I am planning to see Dr Erkan in NYC when it is safe to fly, but would love a local expert. Thank you!

Jmiller623
Jmiller623 in reply to Uzoigwe

You can be antiphospholipid positive without incident but once you have an event and in the setting of a repeat positive aPL, a diagnosis of APS is usually given.

I understand completely about how the anatomy could in and of itself cause the stroke but based on guidelines... if you have a stroke and a positive aPL, you should be placed on anticoagulation for 3 mos then they recheck your aPL status. If you’re still positive, they continue anticoagulation. The dual antiplatelet therapy specifically Plavix will only be for a year post stent. I’m wondering if they just plan to monitor on aspirin after you stop Plavix.

Sounds like vascular and neuro feel they have eliminated your stroke risk completely by stenting the problem area but I think the risk of future event is still there esp given that you were aPL positive during an actual event. I am aPL positive but never had an event. If I did have an event, I’d earn APS diagnosis regardless of anatomical nidus.

Let me ask around about an expert. Even rheumatologists who specialize in lupus sometimes have little to no understanding of APS.

HollyHeski
HollyHeskiAdministrator

Hi, INR is only used as guide for warfarin based anticoageration, anti platelets and heparin based anticoageration cant be do easily monitored.

I really think you need to discuss this with an APS specialist or a knowledgable haematologist?

Usually here in the UK, patients with stents, heart or carotid are advised anticoageration, some conditions antiplatelets as well. Not being medically trained in your conditions I still feel you need an anticoageration?

Either way you will need monitoring and given reassurance you are on the correct medicine for you.

Research states about half of people who have my blood test finding - B2Gp1 IgM positive - are asymptomatic their entire lives.

Jmiller623
Jmiller623 in reply to Uzoigwe

Yes. They are not usually checked unless you have an event so we really don’t know the prevalence of how many people have them and not know. IgM are also common after a bacterial infection.

Something to note is that in lupus patients who are aPL positive, 50% of them do go on to have an event with APS diagnosis over a 10 yr period.

Sent out some messages for referral. I think you should email this pediatric rheumatologist. She has the most APS publications and specializes in it. Her email is on the website. She can probably send you to the most appropriate adult physician in the area. Pediatricians are usually super nice so she should respond if you email her.

pediatrics.ucsf.edu/faculty...

Uzoigwe
Uzoigwe in reply to Jmiller623

Thank you so much!!!

Lure2
Lure2 in reply to Uzoigwe

Wow.....you have got good answers I think.

Thanks for your answers! I am going to wait for a consultation with the specialist in NY - on Mary’s list - Dr Doruk Erkan. He is an expert on research as well as diagnosis and treatment. I thank you all for your help! I have a wonderful hemotologist and rheumotologist, who still agree on High dose aspirin and Plavix for current treatment, assuming a diagnosis of APS.

Again - thanks to Mary for the list of absolute experts - who I will consult with to determine my ongoing medication and my specific risk, because of my other rare diagnosis. Much appreciation!

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