I had a detailed discussion with patient regarding the lupus anticoagulant testing, and I have explained to him that to call a person to have a positive lupus anticoagulant, the phospholipid-dependent clotting time (either APTT or DRVVT) should be prolonged, and it should be inhibited on equal volume mix testing with pooled normal plasma.
Furthermore, the clotting time should shorten by addition of excess phospholipids, thus demonstrating the phospholipid dependence. Warfarin anticoagulation can lead to false-positive lupus anticoagulant testing, especially with the DRVVT method. However, in patient's case, his lupus inhibitor screen (both by APTT and DRVVT) have been negative in October 2016, early January 2017, and late January 2017.
Again, I emphasized that warfarin can lead to false-positive test, but not false-negative tests. To call individuals with a thrombotic event to have antiphospholipid antibody syndrome, they need to have persistently positive lupus anticoagulant, anticardiolipin antibodies (either IgG or IgM), or anti-beta-2 glycoprotein antibodies (IgG or IgM) when measured at least three months apart. In patient's case, he had a single positive lupus anticoagulant test (July 2016), and his subsequent three tests have been negative. Thus, he does not meet the laboratory diagnostic criteria for antiphospholipid antibody syndrome.
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Blake, this is Kelly in Texas. I have been through a very similar ordeal with an APS Physician/ specialist (Rheum) in NYC. He is also a researcher /Professor and on staff at a very well respected university associated with a teaching hospital.
I was confirmed APS in Nov 2016 after testing positive for 2 out of 3 of the anti bodies twice- ( aCL and 2bgp1) 12 weeks apart- then quickly developing two DVT's in my art arm- stabilized before PE. My docs here were having trouble getting my INR to respond to ever increasing dosage of warfarin. They set my INR at a 2.5-3.0 range. I was their first APS patient, so suggest I find a specialist who could give guidance. My misfortune was choosing this guy. ( they thought maybe Mayo? Cleveland clinic? I initially saw you posted one of those so glad I didn't do that either... )
I believe this physician may do very good by some APS patients who do indeed persist in testing persisntly high with titers. He considers high titers anything over 40, and he considers the lupus anti body the ,"most important one". He told me upfront "I'm not going to answer any of your questions until I get tests back next week. Then I'll call you and go over everything. I'm 95% sure you don't have APS and your APS tests will come back negative. " he did say he thought I had another primary auto immune disease and he would test for that, and help me get to bottom of it.
He told me that he held a little bit stricter view point for diagnostic criteria than Dr. Hughes . Yes, the fundamentals were the same, but he feels the parameters are to generous with the Hughes standard.
A week later, he called. Indeed, all tests negative- even the genetic clotting mutations. No APS. He said he would leave final decision to hematologist, but maybe just a baby aspirin.
He "could or could not determine if the clot was provoked or unprovoked." He hummed and hawed around on that sentence and wouldn't come clear with it... said I was on aspirin at the time. I said no- I was not. I had been on a flight to France 4 weeks earlier and I noticed it bothered my arm en route, but my arm had already started to bother me about a week prior. before. I only thought I had a muscle cramp. He just wasn't listening because he already had an agenda.
No explanation of my seizures, abdominal neuropathy and multiple subsequent surgeries for organ dysfunction or failure, migraines, optic nerve death ( neuropathy) multiple miscarriages, eptopic rupture, pediatric idiopathic thrombocytopenia purpura, probable recent TIA, recent gait abnormally that since his visit was diagnosed as transverse myelitis.
He had no explaination other than he thought it was all unrelated.
He has sent his notes to my hematologist, who has never had an APS patient before, but from limited studies, follows his thinking , and wants me off of warfarin .
My other physician team members are not in this camp. My husband , son, daughter and I know this divergent line of APS approach/ treatment ( this is what I'm calling it) can and will be dangerous for many people, and I believe, after studying the numbers alone in case studies so kindly shared by Dr Hughes and the Administrarors, that I fall into this category. So my family and Hughes line physicians decided to send me to the London Lupus Centre Centre for a direct consultation.
I did share with you on another post. The short of it was, I did get a confirmation of a " strong case of APS" ( I did want to make sure of the diagnosis!)
I needed it in writing for my Texas team. I needed a target INR for my specific case. It needed to actually be at least 3.5. ( with Fragmin ( Lovenox , or low molecular weight heparin) injections if I drop below 2..5
I have rarely been above 2.2 in Texas. I'm currently completely untreated.
The letter explained to myGP that often APS patients are difficult to anticoagulate- this is a hallmark of APS! ( as in a... clue it really is APS!)
This was all handled beautifully. It was well worth the trip. I hope once and for all I have this settled.
Now I just have to scramble to get a new hematologist. My GP will help. I've been playing my own hematologist here for over two weeks. In London I was 1.9 vein value. ( disclaimer: I do not advise this. No doctor would advise this. This is stupid! I raised my Coumadin from 12 mg to 15 every third day- 11 the other days. Last night it was 1.7!!!!
Today I have to fly last leg of trip home. New York to Texas- only 4 hours- last night I took 15 again- I'll add 1/2 an aspirin before flight.
Sorry administrators- I know I'm making you cringe. ( edit away if you need- take out what ever you need.) I see my GP Friday. I have NO hematologist! I asked him if he would at least meet me 1/2 way in the middle on this issue and he told me no.
By the way, I see you are in New Mexico? Where? We used to live in Ruidoso. We had a business there and still have property there and are there at least three times a year. We are contemplating expanding a business there again, but until I get better I can't do it- the responsibility would fall to me. I'm too dumb to find my car in a parking lot 1/2 the time right now- seriously. This happened Friday. INR was 1.9!
Blake, I just answered your question regarding abdominal neuropathy, but I think I didn't link it directly to your inquiry, sorry about that. Can you scroll down a couple of posts ? If you don't see it, let me know.
I guess it's my own way of looking at it . I have quickly learned , at least here in the USA, there seem to be two ," camps" , or " lines " of thinking about the diagnostic criteria for inclusion for meeting APS .
Doctors all agree on the initial 12 week apart panel protocol. Check. Then prove out a clot. Check.
But there is all this other business of seizures, ideopatic thrombocytopenia purpura, transverse myelitis, dysautonomia, migraines, fluctuating sero negative, then sero positive , then sero positive antibodies....
Many doctors in the USA are not APS specialists, and if by some miracle are, have some how Slighly DEVIATED from Dr. Hughes' thinking regarding criteria for inclusion , and by this I mean HUGHES LINE thinking. ( or Hughes line physicians)
( I've also started unkindly saying other doctors who do not have Hughes line thinking are ,"sipping the *******Kool-aid...")
I'll just fill in any American doctors name in or clinic name in Astrics so our dear administrators won't have to! You're welcome!
And if you are American or know of Jones town you'll certainly laugh and know exactly what I mean!
I have renamed several sea according to their usefulness and perceived IQ. I have to say you are much kinder then me. They have names like dr do little, dr nemrod, dr dumb***, & so on. I have had to tell a few that no I am not a doctor but that doesn't mean I couldn't have been a dr as I get Upset when they assume they are god and I'm just a stupid blonde looking for attention. At least it gives me the comedic results I need. I use A LOT of humor to deal with my APS. After all you can laugh or cry and crying just gives u a headache!
Gastro paresis. X rays revealed a line separating air on top in bowel loops and fluid on bottom. Felt like horrible stomach virus. Twice a week. Three times a week. Lasted 12 hours. Then gall bladder failed. No stones. Ejection fraction in terms. Started going grangrenous. Then chronic appendicitis.... multiple surgeries. Nausea bouts began in college. Ramped at 28. First surgery Starting age 30. ( now almost 48.)
Dysautonomia. But why? Brain not communicating with organs. Off and on. Neurology found seizures in rt temporal lobe. He thought it was a very rare sub set of abdominal epilepsy. Rare pathway for seizure to pick up.
Now it looks like I actually have transverse myelitis. Yes. I have normal epilepsy- but perhaps more likely the transverse myelitis is causing the abdominal neuropathy. Will keep you posted.
Did you go to England to see the London Lupus Centre? What did they say (a strong case of APS?) and now when you come back you have to look for an new Specialist in the US. Has I understood it right? It is a fantastic story!
Yes. You got it! You have understood correctly. I will not be able to find "one specialist" here. It doesn't work that way here. Not exactly.
My rheumatologist is not an APS specialist. He needs consultation from a specialist. There was one in NYC but... well. You just read that story. The GP and the Neurologists did not agree with the NYC specialists, nor did my family. The London Lupus center was the only logical conclusion.
Thank you! I don't want what happened to me to happen to others here in the United States. I want to help our doctors a little more.
The administrators of this site have been the reason I have been able to learn so much, and have had the assurance to persist in advocating for myself in insisting that my INR shout be higher than 2.0-2.5!
And yes, Kersten, " a strong case of APS". Classic. Very strong neurological component so INR must be 3.5 or a little higher with Fragmin if I dip below 2.5
( transverse myelitis it turns out is causing the balance problems and abdominal neuropathy. This was diagnosed one week before I left for London, and my neurologist and one reason my neurologist said... go see the Hughes team. This is not good and it's progressing. The hematologist is not getting the INR high enough. )
In your case the Neurologist was the wise guy?! Perhaps he is ready to let you have your high INR and a Fragminshot when the INR drops below an INR of 3.0 (not 2.5). Take good care of the papers you got from the Hughes team!
I know a woman from Sweden who went to prof Hughes also. She had APS.
Thank you for all the great info (and sorry for posting a clinic name). Some very good insights. I'm guessing some of the key contributors here can feel a bit frustrated at having to repeat the same basic messages, but its so hard to find a doctor that can corroborate.
I spent a couple months calling every Kaiser clinic in the US looking for an APS specialist. (its where I am covered by insurance) For every region I had to get new patient numbers, approval, etc... Talked to nursed in rheumatology and asked them to ask the doctors if any were experienced in APS. Not a single rheumatology department had such a doctor. I had to pay cash at Mayo as Kaiser insurance did not cover there. Mayo was the first to advise that they did indeed have a doctor very experienced in APS. (The hematologist I saw). Further tMayo is widely viewed as one of the premiere hospitals in the US. Many sources show it at the top of the list.
I see the list of recommended doctors on the APS site and I guess I will start going through that list and calling as I would like to find a doctor that acknowledges they are a "specialist in APS". I have been told several times that the medical community simply has not come to any consensus on APS diagnosis, the existence of sero-negative, etc, etc.
If I had to distill everything down, it sounds like the only doctor out there that everyone can confidently agree is a respected APS specialist is Dr Hughes. I suppose maybe I should save up and hop the pond.
OMG I feel for you. As u will have read I've had trouble getting a high INR set. I live only 60 ish miles from London, UK. I have Lupus @ Sjögren's and am under the London Lupus Centre as well as local hospitals.
This is very long BUT hope it will help those fighting to be diagnosed or to raise their INR...
I had only one +ive Lupus Anticoagilant result but plenty of APS symptoms. They set my INR at 2.5-3.5 and suggested warfarin. My local heomotologost is not happy about my high INR nor does she believe in sero-negative APS but agreed to their suggestions.
My INR is so erratic the symptoms persisted. After a migraine for a month and joining this site, I had the strength to take things into my own hands.
I ordered three books on Hughes. And got to know it better.
I read Proff Hughes blogs on here. I listened to his uTube presentations.
Then I prepared a table listing every INR reading (over the 18 months)
I then made a graph of the readings. (I drew a line at 4.5 Prof. Hughes max reading and 3.5 my max reading and 2.5 my min reading.) I coloured the area between 3.5 & 4.5 green. The area between 2.5 & 3.5 orange (amber) and the area under 2.5 red. From that I could see at a glance the erratic readings and how I was too often in the red area.
I then printed a body outline and carefully marked on it every single symptom I have. (Realising that virtually every one could be attributed to Hughes)
I wrote a list of all current medication
I wrote a list of all medical professionals looking after me; with full addresses and phone numbers (so they could talk to each other).
I wrote a list of all sources I had used to research.
I numbered all pages
Finally I wrote a polite, informative letter to my Rheuatologist asking her to look at the information with a view to raising my INR. (I suggest the letter is no more than 2 x A4 pages typed back to back or the chances are it won't be read) The last page of the letter (page 3) was a list of the enclosed info.
I photocopied it. Filed one. Then sent one to: my rheumatologist, GP, haematologist, local warfarin clinic, London Lupus Clinic.
I made an appointment with my rheumatologist.
A lot of work agreed but I had to take my life in my own hands and I had to prove I had a case for a high INR.
The result - rheumatologist agreed I definitely have APS and agreed a higher INR is required. Haematologist agreed to set INR at 3.5-4.5 as suggested. Monday I go to hospital and will start the process of raising my INR. Once achieved my aim is to buy a self testing machine so I can self test & self medicate to hold it more stable.
It is a long hard road but we have to fight. I'm happy to send u copies of the info I sent if it would help anyone to read it. I just want to help others including uninformed medical professionals.
Love and light to you all, keep fighting / you will get there 💋
P.s. I did this on my own (I was a scientist before falling ill) maybe we could together develop a package of information or guidelines that would help us to inform the medical professionals looking after us about our condition?Something that we could all use? Maybe something similar to what I did?
If everyone did like you have done, they should educate our Doctors and feel much better themselves.
I must say I do about the same and I have figures since 2012 when I started Warfarin. I have also notes of my bloodpressure since 2010 but nowadays it is very rare as my BP is ok when I am at around an INR of 4.0. The INR-readings can say a lot of things if you compare with symptoms etc etc.
See to it that you take double-tests in the vein contra fingerprick as it can differ as you are perhaps Lupus Anticoagulant. That is said if you will selftest.
When we have APS it is exstremely important to write a lot of things down as our memory sometimes is not to be trusted 100 %.
Thank you Kirsten. I was wondering if there is any way we could ask Prof Hughes for advice in preparing the most useful package of information to send to our medical professionals?
I asked about having occasional veinous tests at my warfarin clinic and was told there is no point. I had one b4 I began warfarin and one when the finger prick gave a ridiculously high reading (turned out to be a faulty machine). I will raise it at hospital Monday
It would be great to see ur info. Every person has their specialities. And I think ur right we should use ours to prepare a package. I'm thinking a workbook that's easily completed by patients and valuable to professionals.
Maybe include graph paper that's labled and set out so patients can understand them even if they didn't do well at Maths in school. All they would need to do is plot each new reading.
There should be a table to list medication
A table to add name, address, tel numbers of medical professionals who care for them.
A body outline to mark on each symptom.
Pages that list important information
Pages for you to record any interesting books, blogs, forums etc.
...
It would be an at a glance informative workbook for consultants to use.
Any other ideas? Maybe we should start a separate thread. Other people may then contribute. 💋
is he in the same group? Usually if you are in the same group as the other doctor, they will not take you as a patient. It is seen as " not nice" to the colleague in their group...
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HELP PLEASE
Results back
2 early miscarriages, sub-chorionic haemorrhage, lifelong migraine, but negative test result
Got some tests results back...
