Global APS Score

Hi all -

I have been doing quite a bit of research on APS recently.

After suffering a partial occlusion of a vein in my head, they ran a ton of bloodwork. Everything came back normal - excluding that of the B2 glycoprotein IgM which was slightly elevated. They attributed birth control, dehydration, ear infection, sinus infection and this slightly elevated level.

I follow up with a hematologist 12 weeks later and my IgM is still slightly elevated. He tells me that I have APS, that I should order the positive options for APS book and then follow up with him in 6 months.

This website is referenced in the book. I join and start hearing all of these stories, which makes me try to figure out the disconnect between me and my doctor - because I feel fine, but am being told to stay on Coumadin for the rest of my life.

Again - everything - including IgG and Lupus anticoagulants are normal/negative.

I found a website that is now referencing the Global APS Score and I am wondering if anyone has ever encountered this with a doctor.

Given my age - 30, lack of any other elevated blood levels, partial occlusion with no brain scarring and no other symptoms, makes me question if it makes sense to stay on Coumadin for a year, then switch to a full strength aspirin, plenty of fish oil/natural blood thinners, and meds for my allergies...

Any thoughts are appreciated.

[MaryF Administrator]

Firstly it is great being your own detective alongside working with a good doctor, and some of us on here are Sero Negative for Hughes Syndrome/APS. Where are you located? If they want you on anticoagulants then they must think you need them? Please don't rush into any decisions, regarding coming off them. It sounds like you have a pretty careful medical adviser in the picture! MaryF

[Hidden in reply to MaryF]

Thanks for the quick response!

What does Sero Negative mean?

Might I add, that this would be Primary APS.

I am in Pennsylvania. Healthcare is slightly different in the United States, and makes me feel it is necessary to do one's own research. The neurologist in the hospital that admitted me, recommended this hematologist because they have worked together in the past.

It's just interesting to me, that they would suggest Coumadin for life - without any other related factors, and an abundance of underlying causes for the "partial" occlusion.

[MaryF Administrator in reply to Hidden]

Hi please read your way through everything on the charity website: hughes-syndrome.org/

Also under our pinned posts on this forum you will see a Sero negative section However her to make it easy for you, here it is: healthunlocked.com/hughes-s...

There are plenty of papers around, and also you will probably find other members who have had similar events to yourself, will come on here at

patientblog.clotconnect.org... point:

kjim.org/upload/kjim-16-4-2...

MaryF

[Hidden in reply to MaryF]

Just researched sero negative...well, what happens when you are sero negative without symptoms?

[MaryF Administrator in reply to Hidden]

Well I am not sure that people would look into Hughes Syndrome/APS if no symptoms, but many have full symptoms and a history of events and don't pass a test for years, but it does not mean they do not have it, others go in and out of negative and positive testing. MaryF

[Hidden in reply to MaryF]

It's all very interesting...but to me, I only had a partial occlusion and these slightly elevated levels. No symptoms of any other nature.

[MaryF Administrator in reply to Hidden]

Some people have one event, some have many, if there is not diagnosis things can go very wrong, many on here have had to have my events before diagnosis. MaryF

[Lure2]

I would say that you can be happy that you feel well and that you have got a diagnose. Many persons here have had to struggle with so many doctors before a correct diagnose of APS.

Now you must get yourself an APS-doctor. There are very few of them. If you live in England you can look at hughes-syndrome.org/se/self... in your area.

I have several books about APS. I prefer "Sticky Blood Explained" by Kay Thackray. Prof Hughes favorite is "More Sticky Blood" by Kay Thackray also. You can buy them on Hughes Syndrome Foundation Charity website.

Best wishes from Kerstin in Stockholm

[Hidden]

Thank you Kerstin. My question tends to revolve around whether or not this is fully APS. I have found a bunch of research that states IgM levels alone can not be conclusive...I have also found studies that state females tend to hold a higher IgM after a thrombotic occurrence. I have noticed that many people have secondary APS, as well as a variety of different symptoms.

I have no concern staying on a blood thinner - so long as it doesn't negatively effect my other organs.

[Lure2]

I have had APS since 2002 after TIAs (small strokes). I was on baby-Aspirin for 9 years and now on warfarin since 2011 and selftest. I have always had high titres of all three antibodies even 4 of them. I have tested twice a year and always positive and medium-high to very high.

I have also read a lot of this illness and been on this site for several years. Warfarin is a "kind" drug with no side-effects except for bleeding. As I understand the English doctors here incl prof Hughes like warfarin. It is doing what it is meant to: to thin the blood. Most people with APS react positive and 99 % feel better on it.

Take care and read more about APS. Stay well!

Kerstin

[Elaine77c]

There are a couple of articles I've read that talk about the best treatment combination depending on the particular presentation of the condition - I will look out the authors/titles this evening, these might help you decide if you want to stay on warfarin or an alternative (having had a full discussion with your medical team - who do really sound like they have your best interests at heart). You would kick yourself if you stopped warfarin and then had another incident/clot with a longer term impact. I have had only one small (pin head size apparently) clot in a cerebral artery ie a stroke and the long term impact has been huge. My bloodwork shows full range of positive tests for APS so I don't have the same is it/isn't it dilemma as you, but where health is concerned I wouldn't take chances. If you had asked me before the stroke if I had a autoimmune condition I would not have taken it seriously. Even a partial occulsion of a vein in the brain is not to be taken lightly and must have been scary!

[Hidden in reply to Elaine77c]

Agreed!! And thank you for looking into the articles. I do believe my medical team has my best interests, and who knows...maybe the checkup at 6 months/12 months will have a different conclusion. It has only been a little over 3 months since everything happened...

[Elaine77c in reply to Hidden]

The best one I think is from the Lancet Vol 376 Oct 30 2010, pages 1498-1509. It is a comprehensive description (including tables, diagrams and pictures) of the condition and management of the condition. The title is Antiphospholipid Syndrome and it is by Ruiz-Irastorza G., Crowther M., Branch W. and Khamashta M. A. There is a website for the Lancet thelancet.com but I don't know if they charge for articles. Then there is 'A Systematic Review of Secondary Thromboprophylaxis in Patients with Antiphospholipid Antibodies' by Ruiz-Irastorza, G., Hunt B. J. and Khamashta M. A., in Arthritis & Rheumatism (Arthritis Care & Research) Vol 57, No 8, Dec 15 2007 pages 1487-1495 - that one is copyrighted to the American College of Rheumatology, I don't know if that will make it easier for you to get hold of? I think it would be of interest as it makes a distinction between definite APS and those with less positive results. There is another one which I don't fully agree with as it is solely based on reviews of previous research - including on animals - some of which is a bit ropey anyway, and I don't think any of the people involved are experts in the treatment of the condition, I especially don't like their recommendation that for young adults i.e. 'those having strokes under 50 anticoagulation with warfarin should be considered, but there is no strong evidence that it is better than antiplatelet therapy'. I find that rather worrying to say the least when all experts in the condition would say that an arterial clot that early would always need warfarin or heparin for life, possibly with an antiplatelet thrown in for good measure. Anyway that one is 'Guidelines on the investigation and management of antiphospholipid syndrome' by Keeling, D., Mackie I., Moore, G. W., Greer I. A., Greaves M., and British Committee for Standards in Haematology. In the British Journal of Haematology, 2012, vol 157, pages 47-58 - which I think is an online publication. The main author David Keeling is the Secretary of the British Society for Haematology - so it does not seem so impressive that one of the quoted authors is the British Committee for Standards when you know that!

[Hidden in reply to Elaine77c]

WOW! Thank you so much. These articles are very informative.

[Hidden]

Hi Pitll

"After suffering a partial occlusion of a vein in my head, they ran a ton of bloodwork."

Would you mind me asking what diagnostic workup did you have to diagnose "a partial occlusion of a vein in your head"? Did you have any imaging like MRI ? Am I correct to assume that you are under a Neurologist?

Did they actually tell you if you had a clot or a cerebro artery disease or both? The scary thing about this is that if you had this once, you could potentially have another one and you may not "bounce back" easily like the first one. In fact, if the circulation to the brain is totally cut off, essentially that's when you die or become disabled.

[Hidden in reply to Hidden]

I woke up in the middle of the night and was off balance. I could tell this wasn't normal, went to the ER. The original diagnosis was performed under a CT scan with a follow up MRI/MRV confirming the same.

I dealt with a neurologist the whole time and followed up with him a month later. He stated that everything looked normal/healthy - both through the MRI as well as in my blood work.

Then "all" of the blood work came back and they classified it as "iffy", in my opinion it was from the slightly elevated IgM level phospholipid level, which was at 25.

With the hematologist, he stated that there were multiple factors that induced the clot - one being the ear infection - the clot occurred right behind this ear, my terrible sinuses, lack of hydration, birth control, etc.

[Hidden in reply to Hidden]

Thank you Pitll

It makes sense totally. Thank you xx

[Salty]

Dear Pittill, it is serious to have a partial occlusion of a vein in your brain! You do have APS. The level of your antibody titer often does not correlate welll with the clinical manifestations. I hope that they advised you to go off the birth control. If you do that, it may be very reasonable to just take aspirin after 6-12 months on warfarin. Unfortunately, there are risks with both approaches and you have to do what feels right for you. My brother is "triple positive" ie he has all three tests positive (the highest risk type of APS) and had a massive stroke. He took warfarin for 6 months, had a lot of nose bleeds,etc and decided to go off it and just take aspirin daily. He is highly intelligent and reviewed all of the info and still made that decision. His risk of another stroke is 50% in ten years! but after three years, he has had no problems on aspirin. I have low titer IgM anticardiolipin and phosphatidylserine antibodies, but have had very severe non thrombotic manifestations and take LMW heparin and plavix because it controls my symptoms. in many ways, having symptoms makes the decision easier. It gives you a guide as to what treatment is right. When you have "only" had thrombosis (whether partial or complete, thrombosis is thrombosis), the decision is more of a leap of faith. If it were me, I would probably stay on warfarin because I know the risk of clotting in APS is much greater than the risk of bleeding with anticoagulation, but then again you were taking birth control which is a reversible risk factor for thrombosis so I would also seriously consider eventually switching to aspirin after 6-12 months on warfarin. Too bad these are not easier decisions!

[Hidden in reply to Salty]

Do not get me wrong, I am very grateful to have the team I am working with and am not trying to question their intelligence. However, it is unique to see the amount of people with pre-existing conditions and no real clotting occurrences being put on warfarin.

It is then interesting to read individuals that have had a clotting occurrence, minorly elevated IgM levels and no other symptoms. If this is the case, one would assume that a good dose of aspirin could be sufficient, after the appropriate warafin intake.

[Salty in reply to Hidden]

APS is a very hypercoagulable disorder and many people will clot on aspirin, which is of course why anticoagulants are often used and many patients are on both anti-platelet agents and anticoagulants. I do not think there are many patients being given warfarin who have not had a clotting event, but those who truly understand APS know that there are many patients with APS who have not yet had a clotting episode that have symptoms that can be significantly improved or even aborted with anti platelet agents and/or anticoagulants. Because these are difficult decisions and there is unfortunately not a test to predict the future for each individual, it should come down to "shared decision making" between an informed patient and an informed physician.

[Hidden in reply to Salty]

I agree. I do believe there are other factors that go into this, such as secondary APS versus Primary, and the underlying results of elevated blood levels and any underlying health conditions.

[Rufusandfrankie]

I had a DVT and no other symptoms but migraines which run in my family. I tested negative for APS for 5 years and questioned whether or not to stay on warfarin. I had several opinions given by several doctors. My rheumatologist talked me into staying on it. I'm glad I did because 5 years later I have now tested positive for Lupus Anticoagulant. I am on Plaquenil just to prevent symptoms but so far have nothing but migraines.

[Hidden in reply to Rufusandfrankie]

Thank you for the response. It is a hard decision to make...