Sticky Blood-Hughes Syndrome Support

Newly Diagnosed...I Think

I had a PE 2 weeks ago & now taking 30mg Xarelto. I'm 66, non-smoker, healthy, until this event, which I was told in ER was on the low scale of seriousness. My primary doc told me this was just a blip, I'd be on blood thinners for 4 months & move on. Then, my blood tests came back with an abnormal "lupus anticoagulant" reading, and although my doctor says I need to be retested in 12 weeks, he has already listed Antiphospholipid antibody syndrome under "conditions" on my online chart. Isn't he jumping to conclusions before he has the retest results in?

He told me if the retest is positive, he will refer me to a hematologist and I'd be put on warfarin for an indeterminate period of time. I'm guessing that means for life.

How does someone develop APS? This is so out of the blue that I'm stunned.

For those of you with the APS diagnosis, are there other complications beyond blood clotting? And, how did you adjust your lifestyle to being on warfarin?

I'm still in shock/denial, so getting more info about this condition will help me work through it. And, if you have any overall advice for me, I'd greatly appreciate it. (I'm in Colorado)

Thanks!

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They don’t really know how one gets it. They say it may becaused by triggers such as stress, virus, etc. Hhe may be a bit premature but it sounds like he has your best interest in mind.

I don’t know if the Xeralto will mess up your new testing results as it is an anticoagulant . The good thing is you are in Colorado and there is a very good specialist there: Dr Shoenfeld(spelling?).

I would call to set up an appt as she has a very long waitlist going and the sooner she can evaluate you the better. Good luck, Cindy in NJ

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Thanks, Cindy! I'm assuming Dr. Shoenfeld is a hematologist? Found Dr. Elizabeth Schoenfeld at CU/Anschutz & she is in hepatology.

My doctor plans to wait until late April before referring me to a hematologist, but I was thinking that seemed late, especially if I need to be on a stronger anticoagulant.

Sounds like chances are I'll retest positive in 12 weeks? How could my doc know that?

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Dr Jill Schofield, Dr of APS I don’t know if she is a hematologist Its my understanding she studied with Dr Hughes though so possibly a rheumatologist. Many on here see her and really respect her. Your lucky, call for an appt

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Found her! Thank you.

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Hi and welcoome to our friendly group of people with this illness in common!

I understand it is a sudden chock for you but as a matter of fact it is good if you are getting a diagnose as quickly as possible as our sticky blood needs to be thinned and then we feel much better.

Very good if you are seeing a Hematologist and I hope that Doctor is a Specialist of autoimmun illnesses as that is what we need first of all. They are very rare but most important for us to get the right treatment.

Good that you are already on Xarelto but you need Warfarin and it is important that you take your Lupus Anticoagulant test before you are put on Warfarin.

Later on the test is not reliable with Warfarin in your body. I hope it is reliable with the Xarelto or if you must stop it for some time. Better ask the Doctor but I think it is only when on Warfarin.

The Doctor you are seeing sounds familiar with the procidings that is lucky for you.

I hope you will stay with us here as you can get good info from all our members.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got this illness also and writes about the different symptoms. It is good also for ralatives to understand how it is to live with this illness. I am from Sweden and I found the book here.

Best wishes to you!

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Hi and welcome! Sorry to hear about your recent clot. LA is not the only test for Hughes Syndrome (APS) so it will be interesting to know if you had the other two done too and what those results were. The other two tests are:

Anticardiolipin - aCL

Anti beta2 glycoprotein1 - B2GP1

When you are retested in April if you are on an anticoagulant as has been mentioned it may affect the LA results so best to do all three tests. It does not matter which test is positive it can be one, two or all three and different tests each time. It's just to rule out they are not transient antibodies from an infection that about 25% of people can throw up.

Keep us informed.

Oh and Dr Jill Schofield is one of the best in the USA!

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Thank you VERY much. You've given me a sliver of hope :) I only had the LA test done and recently had the flu, just before this clot happened. All my other tests were normal and I had strong vitals, even in ER with no prior health issues. My mother had a DVT, so I'm waiting on the Leiden V test results for any genetic link.

My doctor said the same thing you did--this could be transient. But, how do they even know when, even on my blood test results, the lab indicated that being on xarelto could produce false positives. When I'm retested, if the LA is positive again and the other two tests are negative, how do they proceed from there? Are all of these test results impacted by the anticoagulant?

I have so many questions! I feel really good on the xarelto & don't have any other symptoms. I'm not back to exercising just yet, but my energy level is back to normal. I wish I could just stay on the xarelto!

Thank you for your reply and I will update my situation as I learn more. Good to know Dr. Jill Schofield is just 25 minutes away!

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You are really very lucky to have Dr Schofield so close to your home!

Read that book I suggested. There is also a second book by Kay Thackray. There are other books written by prof Huges also.

Kerstin

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Thank you!

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It's correct that you can get false positives whilst on the anticoagulants. You would have to stay on them for up to 6 months regardless of wether you have APS or not so someone who has a DVT without a clotting disease would be kept on them that long anyway. In April if your tests is positive but all others negative and you have no other symptoms or risk factors, then it's possible to come off it for a couple of weeks, perhaps replace with aspirin so that you can retest to see if it was a false positive.

Even people who have the condition can test negative to all tests, so making a diagnosis should be done not only with blood tests but with symptoms and past medical history. For instance have you ever suffered from migraines or headaches? Balance or cognative issues like word muddling. Has your circulation ever been a problem especially in winter?

These are just some of the basic issues people can suffer from without realising they are part of a disease. I don't know if you have ever been pregnant or tried and had problems, but one of the main reasons women get diagnosed is because of repeated miscarriages.

Try not to worry for now, there is a good chance that if they do feel you have the condition then you can just continue on the xarelto as there is no reason to change or for things to get worse if you feel good on it. Rivaroxaban which is another name for that drug is the only one to be tested for our condition so you have been put on the right one.

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You've really put my mind at ease...thank you! You are so knowledgeable and encouraging and it's much appreciated...Helpful to know some of the symptoms--none of which I have. I've had 4 pregnancies (all easy) and a miscarriage at the age of 42, but the underlying cause was identified. I haven't had a headache in years. No circulation problems. No cognitive issues--I still work as a consultant. (Trying to allay my own fears!) And, I so agree with you--doctors rely too heavily on testing.

My doctor originally said I'd be on Xarelto for 4 months--30mg for 21 days and then 20mg for the remainder. I just had my annual appt with him and he said everything looked great, the clots were minor, and this PE would just be a "blip" and I'd move on...and then he got the LA result..I looked at my online chart and he already diagnosed me with APS, without the LA retest or the benefit of the other 2 confirming tests. I was stunned.

Also, when they drew blood for the LA test and others (17 vials!) they'd just given me a pneumonia shot. Couldn't that impact the LA antibody showing up as positive?

I am relieved to hear you say I may be able to stay on Xarelto, even if I have this condition. I'd easily do that for the rest of my life. Didn't think that would even be a possibility. I'd assume my hematologist--once I see him--will make that call, or perhaps Dr. Schofield. Do you think I should see a specialist right away, or wait until April?

Once again, many thanks!

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Warfarin can be quite difficult to manage when LA positive. If you do find you have APS and are LA positive, it may be better to make a request to stay on Xarelto.

I was on Warfarin for 6 months after multiple PEs and I was only in range (between 2.0 and 3.0) twoo or three times during that entire period. I found Warfarin very difficult and harsh on my body - my heart certainly didn’t like it!!! I am LA positive but have never tested positive for Beta2 or Anticardiolipin. I then went to a specialist at the London Lupus Centre - he suggested I switch to Xarelto and I haven’t looked back - that was nearly 3 years ago now.

I understand, mostly from reading posts on this forum, that my case is not unusual for those who are LA positive.

I wish you the best of luck and health in your quest for answers!

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Hi Merrohawk83,

I can understand that your heart did not like that low and unsteady Warfarin. It may be that it did not work for you as you should have been on a higher INR. That is why we on LA positive usually selftest as we can follow our jumping INR and react on a change.

I have Pulmonary Hypertension and 2 leaking heartvalves and the Cardiolog insists that I keep a stable and high INR at about 4.0. Prof Hughes has also talked about this.

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Thank you for the kind words & sharing your experience--it's very helpful. Like you, If I could just stay on the xarelto, I'd be fine. I've only been on it for 2 1/2 weeks, but I can't even tell I'm on a blood thinner. I take it twice a day at 12 hour intervals and drink a LOT of water. So far, no side effects. Did you stay on the Xarelto 20mg or 30mg ?

I just hope an INR of 2-3 is all I need. My clots were small in one lung & the hospital hematologist said I was at the low end of the scale of seriousness & likely due to my immobilization/flu. So, this LA result was a big shock, even to my primary doc.

I appreciate your good wishes & hoping for the best!

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I too am lupus AC positive but I've had lots of symptoms. I'm on Warfarin. I've been told that there is NO other drug I can have! I have a fantastic rheumatologist in SE England - Dr Denise DeLord. And now at last after 2 & 1/2 years my haematologist is taking the APS seriously.

You say warfarin affects ur heart, please tell me how as I am undergoing cardiology tests following a week in hospital when my heartrate dropped to 34/36 with occasional beats of as low as 19. All my medication has been checked and not thought to cause problems!

Newly diagnosed I wish you lots of luck. Keep talking to us. Has anyone on your family got any autoimmune conditions? Lupus, Sjogrens, thyroid etc? They are cousins of APS and often run in families. What was the cause of ur mums clot?

💋

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Hi! No one in my family has autoimmune diseases. Lupus, thryroid, etc. My mom's clots were caused by varicose veins.

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Cause? Consider trying a gluten free diet for a while and compare how you feel. If interested, consider checking Dr Perlmutters book, “ Grain Brain” for the functional medicine theory of autoimmune developments. Note: a gluten free diet will NOT cause your immune system to “ reset” and “forget” its autoimmune mistake. But it may keep more “ mistakes” from hsppenning.

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Thank you! I'll check it out.

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Hello all, I just wanted to check in with an update...I went to a hematologist who ran blood tests, ordered a full body CT Scan & scan of my legs. Good news...PE clots are gone, no scar tissue visible, no clots in legs, scans of organs OK/normal & blood tests show I don't have APS, Factor V Leiden, etc. Since an underlying cause has not been found--even though I had the flu/immobilization just before PE--they are calling it "unprovoked" so I will be on 20mg Xarelto indefinitely. Does this treatment sound about right?

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I don’t have an answer but I hope so!

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Me too! I'm trusting this is the right treatment--I'd be worried being off the blood thinner entirely TBH. Better safe than sorry.

I think my situation is a cautionary tale for anyone prematurely misdiagnosed. What APsnotFAB said is so true--some doctors rely too much on testing and discount the patient they see before them. In my case, after a positive LA test that carries a 25% chance of a false positive, no symptoms or fam history, my doctor wrote on my chart a diagnosis of APS. Seeking out a hematologist to drill down on the underlying cause of my PE for me was the best path to peace of mind. We all need to advocate for ourselves with the medical community and support one another to find a resolution.

Thank you all for the guidance and wisdom.

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So do you. Have a specialist to go to?

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I've already seen a specialist. That's how I have a diagnosis and treatment plan.

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I ask because I too, have no symptoms, no family history of any autoimmune diseases, but was diagnosed with APS after my first stroke and was also found at that time to be lupus anticoagulant positive, but so are my anti-beta2glycoprotein and anticardiolpin positive. Best of luck but leave no stone unturned a specialist or someone who has cared for/with many patients of this disease is best.

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I tested negative for beta-2 glycoprotein I (β2GPI) and anticardiolipin (IgA, IgG, IgM). My specialist, who Dr. Schofield recommended, made the diagnosis--no APS. Appreciate your interest and best of luck to you.

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That’s great lucky you. You’re the first person I’ve heard the test came back negative all,the way around! I’m excited to hear this, stay well and thank you

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