Newly diagnosed with APS

Hi there - I am still in slight shock at my diagnosis. I had an unexplained DVT in my right leg & suspected PE nearly 6 years ago. I was also anaemic. I was treated with warfarin for 18 months, rather than the 6 that is the norm here in Gibraltar, mainly because my haematologist saw how nervous I was about coming off warfarin. I have flown transatlantic several times and have injected myself with Clexane. My haematologist is fantastic & continues to thrombophilia test me every 6-12 months. My bloods have been good (except for being positive lupus anti coagulant) and I was unmedicated until 6 months ago when he prescribed 75mg aspirin. Last week I went and he told me I would be on aspirin for life (I'm 58) & he wrote APS on my notes. I'm overweight, dieting with my son, feel fine, work full time, but am worried about the future with this new diagnosis.

22 Replies

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  • Hello and welcome to our friendly forum.

    I am sure that many of our members and my admin colleagues will welcome you too, soon.

    You are among friends here.

    Dave

  • Thanks so much

  • You are very welcome. Many of us are able to live fairly normal lives, when adequately anticoagulated.

  • Hello there!

    Our brilliant administrators will be on very shortly and ask you about very specific blood tests called "anti phospholipid antibody tests" and if your hematologist ( or perhaps another doctor like a rheumatologist or GP, but sounds like most likely the hematologist since he/ she jotted the note down.) actually ran those or not.

    There are three specific blood tests that would be run to detect APS, and you must only test positive for one of the three to meet the lab criteria for APS.

    aCL ( anti cardio lipin)

    Beta 2 glycoprotein 1

    LA ( Lupus anti coagulant.) - side note on this one- it's a terribly confusing name and is not a Lupus test, it has nothing to do with lupus. Additionally, if you were on Wafarin at the time of a blood draw for this panel, this particular not be accurate as it's result is scewed by blood thinners.

    Our administrators will explain and clarify and take it from here, but I just wanted to give you a nice welcome, and give you a starting place to think from. You will have lots of wonderful answers coming soon!

  • Thank you so much - just looked at the form for next test & those 3 you mention are included. I haven't been on warfarin for 4 years or so - just 75mg of aspirin for the last 7 months.

    Just trying to get my head round the diagnosis & prognosis 😀

  • I see that the author has already had a positive lupus anticoagulant and is due to have a repeat of this snatched next blood test

  • So to be clear, you have not been tested yet, but at your next appointment he is going to run the blood panel because he is suspicious of APS, correct? If so, with the brief history you give, I agree.

    often a lazy thyroid accompanies APS, as well as low vitamin D. ( I do not have this but the other women administrators are brilliant with advising on testings for this.)

    Often these defencies can also be clues to other auto immune diseases that run in tandem with APS. Professor Hughes says that often times APS likes to ,"run in hands of three" . The Triad is most often Shogrins , APS, and Lupus.

    If a patient has APS and other auto immune diseases concurrently, it is considered to be " secondary APS."

    If a patient only has APS, with no other accompanying auto immune illness, it is considered , "primary APS ".

    At this point the first thing is to simply get tested. Then go from there.

  • I've been tested regularly over the last 6 years, but this is the 1st time APS has come up

  • Hi and first of all Welcome to our friendly Forum where we all have Hughes Syndrome/APS!

    Did he take the test for the Lupus Anticoagulant antibodies after you had finished Warfarin?

    Does he take the other antibodies required for HS/APS also? We have too thick blood that has to be properly thinned and need Anticoagulation. Clexane is an anticoagulation-drug but not Aspirin. Aspirin works in quite another way and is an antiplatelet-drug.

    I have all three antibodies positive since 15 years and also started at that time with Aspirin 75 mg for my neurological symptoms. It did help for some years.

    After an operation I got worse with more severe symptoms so I had to start Warfarin for life.

    As Dave is saying it is possible to live quite a normal life if you are properly anticoagulated for symptoms you have or have had.

    Once having a DVT and PE and Lupus Anticoagulant I suggest you visit a Doctor who really know Autoimmun illnesses. Sometimes other autoimmun illnesses can go hand in hand with HS/APS like Sjögrens, Lupus, Thyroidea-illnesses etc.

    Best wishes from Kerstin in Stockhom

  • Yes I was tested without warfarin several times & the last time with aspirin.

  • Why I ask is because when we are on Warfarin we can not do the Lupus anticoagulation-test. Then it will not be reliable. Does not matter with Aspirin.

    Good Luck! Hope you stay with us here.

    Kerstin

  • This reads to me as if you are a positive case for APS. Technically, to follow lab protocol, you have to "pass" a positive APS blood test twice in a row with a 6-12 week wait period between to rule out a false positive. ( sometimes an active infection or a medication/ drug in your system can cause a false positive but clearly not the case with you because you've clotted/ had a PE.)! Once you tested positive on the lab criteria and met the clinical criteria ( clotted) you really do need to be on some kind of actual blood thinner ( usually Wafarin) for life, as Kersten has said. Not an anti platelet.

    Gibraltar is a large city. I'm near San Antonio, Texas- also large. Over 1 million. We don't have true APS specialists, only doctors who may have "had a few cases." In my opinion, ( because I had to do this quickly) is switch from a hem/ onc which is a hematologist who basically deals strictly with oncology patients- to a true hematologist. Yes, they are also oncologists, but they stay pretty much exclusively within the sub specialization of pure blood diseases. They will see the Lupus patients, who can also clot, by the way. I know you have a good relationship with your hematologist- but does he specialize exclusively in just "blood illnesses?" If he spends 95% of his time with pure oncology patients, then he himself may be more comfortable referring you to a colleague who specialized more in the pure blood side of things- pure hematology. One with APS working knowledge would be if the utmost importance to you.

  • Gibraltar, although a country, has a population of just 30,000! My haematologist (Pepe) therefore deals with everything. If he wanted to refer me I would have to fly to London. I am feeling well and am aware of the warning signs of DVT/PE - I've been to A&E several times with cramps & calf pain & they are very patient & understanding. I will get an appointment with Pepe as soon as I can to discuss anti-coagulation treatment or referral to the UK. I was just a bit shocked when I saw APS & should have discussed it with him - he told me not to worry & to live a normal life. Thanks for your help.

  • There is also another coagulation drug LMW Heparin which is easier as you do not have to do the INR-tests and doubletests in the vein as with Warfarin. You also can eat all food without worring about the INR that drops or raise.

    I you take Warfarin later on (which I think you should consider) it is easier to selftest and then as you are Lupus Anticoaglant like me, you have to do double-test (both fingerprick-test with the CoaguChek-machine and a venous test at the lab) Why, is because we have different numbers of the INR in the finger and in the vein when we have LA. The difference for me is an INR of 0, 6 and 1,1 (the greater difference if the INR is at a high number that special day) and the fingerprick test is the higher one. You have to make sure that the difference is always THE SAMEwith a small discrepence of 0,3 which is tolerable. It sounds difficult which is is, but you will learn when you make notes. I have done it for 5 years now here in Stockholm (Sweden, Scandinavia)

    Now you have got a lot of info in a shot time. Better that than too little I guess!

    Kerstin

  • Ok, world geography refresher for me. I'm thinking South Africa. Why? I'm about to google it and feel very out of touch!

    You will learn a lot here! Between the admin on this site and googling prof Hughes brief lectures, and pinned posts on this site, and looking up prof Beverly Hunt and Hannah Cohen ( both Hematologists in London who are APS specialists) I'll bet your hematologist can figure this out just fine!

  • Ok- yes-the straight north of Africa/ south of Spain. One final thought to tuck away-if you should ever need it. Just for consultation. You have a very fine APS specialist who trained under prof Hughes in Barcelona in Either Barcelona or Madrid. I think Barcelona. His last names starts with the letter C. Cerverra I think.

  • Thanks so much

  • Hello there and a welcome from me. It looks like the others above have done a good job in explaining things about the aPL tests. It also looks like from what you have said that you are persistently positive to the LA. Many people are just positive to just one but you may find that the other one/s might turn positive too as antibodies can actually go in and out of positivity over time.

    What I would say to you is that its much better that you have got a diagnosis and know what you are dealing with. Id advise that you learn as much as you can about this disease and the most common symptoms, like migraines, balance problems, cognitive issues, fatigue and muscle and joint aches and know about the accompanying autoimmune conditions that can spring up to join the party, like Sjogrens and Thyroid. Have a healthy respect for the disease. Do what you have been doing like injecting with LMWH when you fly long haul (over 6 hours). Keep mobile, exercise daily if you can even if its just walking. Immobility is your enemy.

    As you are lucky enough to be asymptomatic then there is no reason why you cant lead a normal life and continue to do so. If possible find a Hughes/APS specialist who deals with the disease daily, there are some good ones in Spain and members will come on and suggest them Im sure. Of course you can fly to London and see Dr's there. Im familiar with the way your health system works so if that option is available to get good solid advise about how your treatment plan should be, then its a good option to do that and bring it back and give to your local health care providers in Gibraltar.

    Have a good look round our site, read Prof Hughes blogs or watch his videos - they are full of useful information. If there is anything specific you need to know just ask. Above all, don't worry! This may seem like its a terrible thing but we all learn to live with it and you will too once things settle down. Carry on with your life and don't worry about the future, its certainly better now they have got a diagnosis and know how to treat you! x

    Oh and good luck with the dieting - make sure they test your thyroid properly, not just the TSH. That may well have an influence on how well you do. 😉

  • Thank so much - I am so grateful for all the advice. I'm tested for TSH - what else should thyroid test include?

  • APSnotFab is the expert in this, so I'm leery to speak on this subject. Mary F is also very keen with this. I'm going to try to remember what they have said.

    Firstly a mention of vitamin B before I forget- make sure the B-12 is high enough. It can go too low in APS patients, they advise, which makes us feel unwell.

    Secondly, with regards to the thyroid testings, I believe you must make sure the conversion from T-3 to T- 4 happens correctly. The basic thyroid panel is not detailed enough to catch this problem.

    I don't suffer this problem but I believe this is correct.

    (By the way, I really enjoyed learning about Gibraltar! I quizzed my 15 year old son and husband and they thought it was a city also. Shameful. We have even lived in Europe! The cave looks amazing, the Spanish spoken is Andalusian, ( that's very interesting) and the architecture is beautiful! Shopping is duty free? It's a winning combination! I am now ever so slightly educated about Gibraltar, so thank you!)

  • Thanks so much - I will add this to my list to discuss with Pepe 😀

  • Glad to hear that you researched Gibraltar - it's a beautiful & interesting place - packed with history

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