Hi, I am confused and wanted to see if anyone who is triple positive without a clot is on blood thinners. My short story is I had double vision/VI Nerve Palsy and was triple positive. 2 weeks later I felt acutely sick with some neurological symptoms and horrible leg pain etc. But, still no confirmed clot. Since I was high triple positive my Hematologist In Los Angeles put me on Warafin. I feel better although still have some issues but much better since being on Warfarin. Some doctors thought I might have had an infection but the follow up at 10 weeks show I am still high. My newest tests are 53 Anti-Glycoprotein and 63 Anti-Cariolipin (up from 20 2 weeks before). My LA will likely not be accurate since I am on blood thinners. I have seen Dr. Erkan at Hospital For Special Surgery (he dedicates all his time to APS research) and waiting to speak to him after the test results. One hematologist in NJ thinks I need to see a neurologist to make 100 percent sure I didn't have TIA's etc. Usually if you don't have a thrombosis they don't put you on preventative Warfarin but I read an interesting research article that said if you are triple positive without thrombosis you have a 37-50 percent chance of having a clot over 10 years. Don't like those numbers.
Any thoughts appreciated.
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The leg pain was probably due to blood clots that were small enough to clear up on their own and the neuro issues were likely due to TIA. After they clear u can’t tell it was ever there, though they can leave invisible damage. Like a TIA it’s over before ER can find it. That’s my thoughts and I am NOT a dr just a patient! Again not a dr. Just a patient with APS diagnosed in 2009! Warfarin is a pain to take and monitor but it keeps me alive!
Thanks! I just feel since all 3 are positive not being on anything is a big risk but some doctors say if you didn't have a clot you don't have APS officially but a 37-50 percent of a clot makes me want to stay on blood thinners. They don't have enough research done in this area.
Why do you have a dr in California and Dr Erkan in NJ also? Where do you live. Although Dr Erkan does studies many here have not had good experiences with him. Hope some will reply as to their own difficulties. Take the information they may give you and decide what is best. I have not experienced any time with him so I cannot respond. Good luck, Cindy
Thanks! I live in California but am going to spend part of my time in NY/NJ so I went to see a hematologist at the thrombosis center at Robert Wood In case of an emergency happens when I am here. Does anyone have a neurologist recommendation that knows APS in NJ or Manhattan or Philly?
I am in Central jersey near Princeton and Marlboro where my family is. Also staying in NYC part of the time I am an hour from Philly and Manhattan. Thanks for responding I know you are in NJ too!
I concur with this advice given by HollyHeski I would really stick with that Haematologist. Those blood tests do mean something!!!!! Let alone your symptoms. MaryF
Although I am not triple positive other numbers were very high.I haven't had blood clots etc but have neurological issues etc and was put straight on warfarin. Doctors who say you can't have APS without clot are ignorant
Hi I am triple positive with very high titres since 2002. I am on Warfarin with an INR around 4.0 and selftest since 5 years back.
I have micro-emboli and clots and therefor they have never seen a clot on me. They are not seen on a Scan of today.
I had a lot of neurological symptoms (TIAs) and today I have Pulmonary Hypertension and 2 leaking heartvalves. I live in Sweden.
The Neurologists do not usually "get" that we have just too thick blood that has to be properly thinned to get rid of the tiny clots that do harm to our body.
A Rheumatologist or a Hematologist are the two types of Specialists that may know of this rare and rather "new" illness. Look for one who has had patients like you before and knows that some of us have micro-emboli.
You should also have LMWHeparin (Fragmin)-shot to take when the INR goes under 3.0 or whatever.
Thanks Kerstin. It is important that we do our own research although it gets me nervous we have to be our own advocates. My symptoms are much better on Warfarin but I do want to get a full neurological workup again. It just looks dangerous to have 3 high numbers and go off Warfarin and wait for that first incident that they recognize which can have a bad ending.
Many of us have had the frustrating experience of being positive and symptomatic but not with enough damage to show up on a scan. Some of us are told its all in our heads, others given a catch all unspecific diagnosis of “fibromyalgia,” which many doctors use as a polite way of saying “its all in your head.” All the while the symptoms and pain continue , often accellerating to alarming levels. And yet when we reported the accellerating symptoms many doctors take that as additional proof that we are emotionally unstable.
And yet micro emboli do happen. Rare in the general population, but not rare among us. So, IMHO you are fortunate to find a doctor who believes in the “ try the thinners and if they work that confirms the diagnosis” school.
And yes, serious bleeds while on thinners do happen. Doctors know and fear this. But remember! Most patients take thinners because they have a sticky SPOT in their circulatory system, such as a stent or a valve relacement. We have sticky CIRCULATORY SYSTEMS! In all my years on this site I recall just one instance when a Hughes patient had a bleed, and I think that involved heart surgery.
Warfarin continues to be the usual treatment. Its relatively cheap and has few, if any, long term side effects. But one does need to learn how to live with warfarin. And for some that can be challenging, or downright impossible for probable genetic reasons, You can find on web any number of sites with info on dietary needs. Check back here for more advice as needed.
Thanks so much Gina. Good information! I understand they give aspirin more often when there is no apparent clot but in reading recent research being triple positive increases risk of first incident by more than I am comfortable with but I will gather all opinions and see what is best. Thanks!
It’s a weird illness where they know you run a greater risk of having a clot but are reluctant to treat it. Guess it shows that anticoagulants are quite a significant drug regime. I developed a rare dvt just with one positive factor.
I’m very glad you glad you saw Dr Erkan, and with titers in high range, I am very interested to see what he recommends , despite having such “ bookish” viewpoints about clotting criteria, at least as of Jan 2017.
I whole heart heartedly feel you have micro clotting that are difficult , if in most cases impossible to catch on many types of scans. Most of us have had seasoned doctors tell us this very thing.
My Vascular surgeon told me when blood clots in deep veins are fresh, they can be ( certainty not always- but this can one of the contributing factor to the high margin of error in Doppler sonograms) compressible, and clear, or able to see through. After about four weeks old, a clot will be considered chronic, and blood will become ,” speckled “ and harder to see through on a Doppler ultrasound. Could be your leg? Mine was right Brachial/ arm. ( I myself, have never had a chronic clot. I just keep re clotting .)
Arms, legs, these are seen clots.
Brain-eyes- micro clots not seen, but the evidence is left behind as seizures and optic nerve atrophy.
Optic nerve atrophy- micro emboli rue strokes. Definitely leaves evidence- doesn’t fit in the classic criteria - but my astute docs are now putting it in. ( for my case. Because it’s continuing despite INR over 3.8-4.2 - but there are those dips.
TIAs- no evidence on MRI- clean. ( Thankfully!)
Gait imbalance- mri of brain and spine- clean but suspected capillaries micro clots to nerves in spine - mimics non acute transverse myelitis
Bowels ileus- micro clots to bowels- / Nerve clotting. Parastalasys to bowels and resulting ileus. “Mesenteric bowel congestion.”
Thanks for the update. Remember, specialists themselves can’t agree among themselves. Dr Hughes has the overarching , all encompassing multi dimensional and cross dicipiline , broad understanding of this plus the benefit of the sub specialization of rheumatology. I have found very few doctors before or since with that ,” magic feel, or sense” about them. But there are a few. I have a couple of them here. They have the unique ability to sort puzzle pieces quickly and accurately.
I was told by one, who was too humble to accept a compliment, but instead deferred a compliment to a colleague: “ very few can soar as Eagles. The rest are simply sparrows.”
Good to hear from you Kelly. Sorry for all you have been through. I think your case is teaching the doctors more about the illness! Do you know if Dr. Hughes or associates in London will look at records and give an opinion without seeing me? That might be helpful to me when making a decision. Ant to determine how important it is for me to be on blood thinners. I felt SO sick before going on Warfarin and am much better so don't want to go back there. Thanks for all of your continued support and advice. Let me know when you are in Princeton.
No, I shouldn’t think the London Lupus Centre would advise you without you being seeing you . They would be happy to serve as consulting rheumatologists to your American physicians. Your primary care physician only needs to send a referral letter, and pertinent records to APS history.
They need labs. Likely they would repeat some there, but they do try to use what they can of what you bring , as they are very courteous and mindful to not be wasteful of your financial resources. Why repeat of not necessary? They are extremely pragmatic and use common sense. With that said, they do want their own metrics where applicable- so it’s neither at all fair to you the patient,nor them as the treating physicians to start off with such a handicap as to not have you in clinic personally face to face- they would not even be able to examine you.
I would certainly say no. Perhaps APsnot fab would say differently, if she is reading this, or MaryF, as they have had years more experience than I have had with the London Lupus Centre, but if you think about it carefully from the long range perspective of both patient and physician, I think you see my point.
( the thought of traveling right now to you is unbelievably overwhelming, I am WELL aware. I was in your shoes and in many ways I’m there again. I’m having to make such a decision- a horrid one again- about neurology and immune suppression. )
You can find the right team in New Jersey, maybe, Rutgers. The team I have purposed minus neurology. Blom would likely recommend a neurologist. I can get him my updated paper work- labs- and I can conf call in on your appointment while you are there if you need me.
Hang on- cart, You’re putting the horse before the cart a little here. Let’s see what Erkan says. Did he seem to feel it was APS? Or did you get the feeling he though since you had no “ identifiable clots” it was something else?
Thanks. I am seeing Dr. Blom to manage my INR. I like him. I also did a consult with the doctor you recommended at Rutgers and she did take many thrombosis blood tests and I asked for a Doppler. Both did recommend a neurologist but I want to go to the right one so I am researching before going. Dr. Ekran's gut before the new positive results was that it might have been an infection since it was acute and is now better but I think he will have an opinion on high numbers for a second time. I just know London has a different philosophy than the US and are not as strict so I thought seeing what they say about triple positive, no known clot and Warfarin. Thanks for always being so helpful. I hope you find the right treatment.
Good to know about CP. call her that- CP at Rutgers. Otherwise it may be Healthunlocked rules get yanked. Ok. She’s too “ bookish.” Yes. Sad American stuff- but it does keep patients safe from bleeding out if they do not have APS. It takes a very astute and seasoned APS specialist to understand the value of the “ bookish approach “ of criteria and blend it with the clinical presentation and history of the patient sitting before his or her eyes. That’s years of a fine soaring eagle.
APS parients statistically have more complications from clotting events than bleeding events and there is documentation to support that. Admin can link you to such publications.
Oh, my entire family will be in Princeton next week- without me😕
But our daughter... ( and I think ...her FIANCÉ! ) are here for fall break from PhD programmes at Princeton. Right now. Both almost 26. Just introduced him to entire family this week! Big parties at our home- her grand parents home- so fun! We all like him very much. Tomorrow is kite boarding and water skiing on lake . Back to Princeton-
But the next week business near by takes the entire Texas team ( family- grandparents, aunt, my husband) to Princeton area- do they will visit there!
I will stay here because our son, Grant, is still in secondary school. ( Sarah is in Princeton Landing. )
I am a APS triple pos. primary male and i have to stay on warfarin because of other conditions most other Anti's just are not strong enough and even though i test every 3 days most of the time i don't care - it keeps me safe more than most . I do have Enox at the ready all the time 40 - 80 - and 120 ml-syringes , ihave if needed when INR drops below 2 my range is 2.5 to 3.5 BUT the new Gal that monitors my INR doesn't freak unless i stay over 5 on my INR . I am a clottere DVT most in Left leg behind Knee- But in 2009 i was loaded with clots in both lungs left groin - left knee - and neck and under left arm pit !! So i am happy to stay on the warfarin and by the sounds of the replies you have gotten it looks like we are all in agreement that you should stay with it also . Best to you - am i correct that you are female . ??
Thanks. Yes I am female. Sorry you had all of those clots. I don't want to go off of Warafin because I haven't had clots YET when being triple positive increases the risk but not all doctors agree with this. I have 4 good doctors so I will take their opinions. Thanks again.
I believe it is better to have one Specialist of autoimmun illnesses to ask than 4 good Doctors. A Specialist who has had patients with our illness before and knows how to ask questions and treat you.
If you are triplepositive with high titres it should increase the risque. You write you have had symptoms and a possible DVT. There are micro-emboli and clots (I have that) with this illnes and they are sometimes very difficult to observe on a Scan.
What therapeutic level of INR have they put you on?
I am only seeing specialists. I have a few as I am going to be spending more time on the east coast so I need doctors on both coasts. I am seeing a few hematologists and an APS specialist at a top Manhattan hospital. I just need to find the right Neurologist. I did not have a DVT but will be getting tests again as I was very sick after I had MRI's in hospital so want to rule everything out. My INR range is 2.0-3.0 having trouble getting up to the higher end but I do feel better with many of my symptoms. I know you have a great deal of experience with APS so thanks for sharing your thoughts. I am new but doing research. Where can I find the article list. I think you should look at the link I sent yesterday as his research was very detailed and informative.
My Hemo is very good -she has not always agree with me BUT always hears me out and is not afraid if i insist on things to go with my wishes . we have had our battles . But a DR. like her is hard to come buy here . Glad you have some good Dr's working with you and you are comfortable with them as this is very important in my book .My INR"S as i have said are crazy and always have been the triple pos. primary male leaves me in a not so good place.Most of my other medical problems are directly related to the APS and there are many. Bet to you and keep in touch as you go Thanks C & J
Yes that don't always change anything but keep track and make sure i don't plummet ar sky rocket out of sight . I live in NH and they are very ultra conservative here -when i was at the PCP'S office they wouldn't let me stay above my high range of 3.5 BUT now i am at a clinic {even though i have to educate them } Te gal i deal with won't freak unless i stay above 5 -Like yesterday i came back at 3.7 so we will hold that same warfarin dosage as i do go up and down. i did however just win the battle of Enox if i drop below 2 and only use a #2's war if i stay above 5 but she has been good so far . I don't know what i would be with a finger test as my Hemo Dr. is in agreement i can't use it being LA positive along with my other problems and i don't mind going to get a blood draw it seems to work the best in the 8 years i have dealing with this LOVELY DIS-ORDER . HA HA so i don't know how it would work with the finger test.Many of my other specialists watch my PT / INR results every Tuesday and sometimes they will check Fridays but mostly the every Tues. draw
I have missed something very important now. I thought you had to selftest with all your jumping INRs. I have those also. But I selftest very often. I could not be on Warfarin without selftesting and the back-up from my hospital.
Could you test LMWHeparin(Fragmin) instead? Is that not possible in your hospital? Could you talk with your Hematologist about it perhaps?
A big Hug to you and to Casey and sorry for my bad "memory" as to selftesting.
Hi Buddy-- What do you mean --Test with fragmin - do you mean go on it as a anticoagulant , if so no i can't it isn't strong enough - and i not sure i would trust it as my wacky body does so real odd stuff and i would be afraid of clotting with no way of telling what my body is doing , I have had many talks with my Hemo about this very thing and as a matter of fact she isn't happy i keep clotting DVT - But i fell most times . no pain swelling or bruising . and other times i do but these other oral anti's aren't approved anyways and i like to know what my body is doing -i have had some things happen with me that are medically unheard of... hope i answered what you were asking my friend -- Big Hugs from C & J
No it’s not ‘stronger’. I asked Prof Hunt (via Twitter) a while back and she said it’s much more complex than that and different people react in different ways but one isn’t superior to the other. However it’s not been trialled against those like us who do require an inr of 4 my haematologist said last week. Xxx
As far as I know it is not stronger with Warfarin but the Fragmin-shots are expensive and you have to take it every day and it is calculated at your body-weight. On Warfarin you also have an antidot in K-vitamin.
My Hematologist said that Warfarin was better and I know she knows a lot. But when a patient with our illness can not keep the INR in range and clot a lot and can not test the INR often enough on Warfarin, I should go for LMWHeparin(Fragmin).
I know APsnotFab knows these things very well. It is also a "money"-problem I guess. Now I am talking about things that I am not quite experienced in however!
I have never had an absolute confirmed clot but have been on Warfarin for my APS for 13 years. I have had many TIAs over the years whenever my INR level drops below 3.5
I do not self test. My insurance does not offer that. They keep my range in 3.5 to 4.0. But whenever it falls below 3.5 I start having TIA's. I occasionally have one when it's in range. I am not aware of any specialists in our area that focus on auto immune diseases. I was just in hospital for 9 days a few weeks ago cause my PT and PTT were so high they couldn't calculate them. They didn't think I was going to make it. They called me their medical miracle. Plus I had pneumonia on top of it. Still haven't fully recovered. My APS testing was done more than 13 years ago. All I remember is that I talked to a New York doctor whom I heard knew a lot about APS and he told me my results showed I had type igA. And he called it the rarest form of APS.
I am sorry to hear what you tell us as you really need a Specialist of autoimmun illnesses who has had patients like you and who understands what you talk of and who also knows how to treat you.
Where do you live in the US? You talk of a Doctor in NY who knew about APS. Try to find him or someone else like him.
Who put you on that rather high INR of 3.5 - 4.0? I selftest every second day as our INR changes a lot. Have you talked to that doctor and said you clot and what did he answer? Did he think it was ok that you continued to clot a lot?
Wish you could find a Specialist as you do need him!
I live in Florida. It took us a long time to figure out my INR range. If I drop below 3.5 I start having Tia's. I've talked to some people in our APS group that have to keep even higher INRs than mine (5-6) . You are right, I definitely need to find someone well educated in autoimmune diseases. I almost died in October when my INR was greater than 12. The insurance companies here don't cover that self testing machine. I sure wish they did. It's nice to have this group to communicate with! Thanks everybody for being there for each other!
I just want to tell you that those of you in Florida (in your APS-group) who selftest and have a positive Lupus Anticoagulant (one of the 3 antibodies they test for APS), can have an INR of 5 or 6 as the selftest-value in the finger is bigger than that in the vein at a lab-test (taken not more than three hours later).
I very high INR (perhaps too high) in the finger gives an even bigger difference to the vein-value.
I have an INR of over 5.0 with my CoaguChek XS-machine and then around 4.0 in the vein. We are different of course and not everyone has a Lupus Anticoagulant positive. With that antibody it can be difficult to manage Warfarin. There are other obtions though like LMW Heparin.
Good that you have an APS-group to talk to. Perhaps they know of a knowledable Specialist of autoimmun illnesses who knows APS.
I am triple positive in very high titres, with a suspected TIA last year, numerous suspected clots which haven’t been found. I have neurological symptoms and abnormal PET scan.
However, I am not anticoagulated, I am on maximum anti platelets. I have the haematologist, rheumatologist and neurologist all disagreeing about it and I am waiting for more Brian tests (been on waiting list since June)
I do not feel I am properly medicated, and they are constantly scanning me as my d dimer keeps getting raised.
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