I have not had a thrombotic event yet in my life, but did have multiple miscarriages and a stillbirth. I also had suffered from severe left-sided migraines, and was put on the aspirin and 75mg of nortriptyline.
After the stillbirth, I was told I had Lupus Anticoagulent and APS...aren't they the same? Since that diagnosis, I have had multiple doctors tell me they doubt the diagnosis. My current INR is 0.96, and I am on just 81mg of aspirin daily. Is that enough?
Yes, APS and lupus anticoagulant are the same thing - lupus anticoagulant (LA) is one of the three tests which look for antiphospholipid antibodies. Here is a blog I did about the name issue a while ago - hope it helps!
No doubt many of you will have been confused by the bewildering array of names for Hughes Syndrome ...
Currently, buzzing around are: the antiphospholipid syndrome (APS); the antiphospholipid antibody syndrome (AAS); the lupus anticoagulant syndrome (LAS); the anticardiolipin antibody syndrome and, not forgetting, good old 'sticky blood'.
One thing is for certain that when you go to be tested, they are looking for antiphospholipid antibodies (aPL). As the condition is so new, the name has its own kind of energy amongst international researchers and clinicians and hasn't yet settled.
For the time being, we will stay with Hughes Syndrome named after the doctor who was leading the team who first described it in 1983, but hope this doesn't add to the confusion!
I should imagine in a few years from now, there will have been some international standardisation and we can finally all agree on one name.
INR is usually kept quite high from between 3.0-4.5. The idea is to get it as low as possible without the patient having any symptoms.
Hi, yes Lupus Anticoagulent and APS are the same thing. Many people test negative at some time after a positive test. It does not mean it has gone though, antibodies just fluctuate. Don't let a Dr take you off medication whatever you do.
If possible try and get a referal to St Thomas as they are the best in the field and hopefully get a definate diagnosis for your GP to work on.
As for INR you do not have an INR range other than 1 unless you are on warfarin. INR is an internationally recognised method of calcualting clotting times only in patients on warfarin. Everybody not on it will measure around 1, I cannot understand anybody testing for INR if you are not on warfarin as it is pointless.
I am on warfarin and diagnosed by Prof Hughes he set my INR at 3.5-4.0.
I do hope that helps you.
I live in California, so I don't think that a visit to St.Thomas is an option. Currently I'm working with a group of doctors that are fairly young and seem to be willing to listen and learn as much as they can to help their patients.
hi 623 i have been getting some good feedback of places and sites in the u.s. i live in n.h. , a little closer to the u.k. but still out of the question [ ha ]/ check out apsfa@apsfa.org there is good info you can access [608-782-2626 ] or apsfa.org i just contacted them got on mailing list. give them a try, and do me a favor , get back to me and let me no how you made out . thank s and be well bbn jet
Hi marse,
try looking on Hughes foundation website for info to give docs, is good that you have a team of docs who want to learn.
I have lupus anticoagulant positive Hughes syndrome, like yourself i have had multiple miscarriages, but also had dvt and pe in 2007 not dx till last year tho!! My tests are not always positive either. Don't change the fact i have Hughes.
Currently on warfarin with inr range 2-3 which i believe is too low, from what i've learned on here. also know i feel worse when inr too low.
Keep pushing with your docs, about the headaches which are common in aps!! although is standard practice to treat with aspirin if you have'nt had a clot. i understand your worries.
Aps foundation of America website, hopefully should be useful.
Hope this helps, keep in touch, hope you feelin well today.
Take care gentle hugs sheena xxxxxx jessielou xxxxxx jessielou
Technically, I don't think Lupus Anticoagulant abd APS (Hughes) are identical. Dr. Samuel Rapaport discovered the Lupus Angicoagulant around early '50 here in San Diego at UCSD and is reknown for the discovery; I believe the APS was not identified until early '80's by Dr. Hughes. Dr. R is now very retired after receiving every imaginable award, degree, whatever, and he does not practice (he saved my life in 1991 when I was sent to him after a huge stroke....docs were not treating my INR as needed, and I was amazingly lucky to have found Dr.Rapaport....My LA was so prominent that he used me as a guinea pig for a long time! He is wonderful. I think that many US docs are totally unaware of o the term Hughes Syndrome (most I've encountered are). This is sad because naming the APS after Dr. Hughes makes it so much easier, but it is almost a strictly European identifier. That gets everyone confused. Even my Hematologists don't call it that, but what they are now saying is that (hope this makes sense to someone) these hypercoaguable disorders fall under the "umbrella" of Lupus Anticoagulant. There are other disorders (Factor V, Protein S & C, and on and on). I test positive for all and havea 50 year history of "Lupus" because it started with a massive DVT's in 1960 at childbirth.
The biggest factor for me has been that in identifying the APS (Hughes), an INR targetcan be establishd that is HIGHER than just Lupus or other clotting disorders. Many of us are between 3-5. This freaks out docs who don't undestand these rare diseases. BUT ifI go below 3.0 (say o 2.8) I'll likely have a TIA. Yet the bleeds foro past three years (hemorhagges and hematomas) have been powerful and turned entire limbs pitch black, truly disabling me for many weeks with massive pain included. Dr. Rosove at UCLA told me that my age has a lot to do with it. Once you have been taking coumadin for this many years (21 nonstop and other times in between since '60) we become "LOW MANAGEMENT COUMADIN PATIENTS" and it is really difficult to maintain and stabilize the INRS with tiny doses of coumadin. My cumadin dose is practically miniscule, yet I get huge boeeds now. I took it for YEARS without a single problem, but Dr. Rosove stated that the elderly body just doesn't wantto tolerate it anymore.....so these little doses still cause massive bleeds not life-threatening yet, because I'm so highly anticoagulted that I prob won't havea clot, but it is a huge problem...jumping everywhere from 2.8 to 6.2 to 3.0 etc etc etc in little periods of time (like 2 or three days). He said that you can get Coumadin Necrosis and get tiny dots all over your skin, look flea bites. I hae had some.
I think that or me it has been simplified to use the term "under the umbrella" of hypercoagulable ddisorders which is what Rheumy says. My LA is just as prevalent today as it was at stroke 1991. Some get better, not mine. I'm covered with bruises besies the giant hematomas. It's crazy-making and now they test 2x a week. You can find out about the lack of tolerance that builds by going here:
week.en.wikipedia.org/wiki/Antic...
Anyway, the naming of and identification of these disorders is confusing at best and I've dealt with it for so long...it's almost like these people do not talk to each other. The USA site APSfoundation is similar to Hughes, but it is too bad that we aren't directed to BOtH by our docs. When I see a new Hematologist and he's NEVER HEARD OF Hughes Syndrome, it blows my mind, but it happens all the time. My disease has been ultra active past 4 years when my vertebrae just started fracturing, I've been to a milion appts. and still cannot believe that the majority of professionals do not know about these disorders.
I'm not sure if this made sense, but it is my understanding that there is a difference (tho subtle) between the LA and APS, but I'm come to believe that the only important thing is that you get and stay properly anticoagulated (which can be hard) and you have to be your own doc. There is masssive info now on internet, but mostly we are left in the dark. I called to make aappt. to new Hematologist few months ago (closer to home) and asked the nurse if he treated APS (I used every term I knew to get it across) and she maintained that she has never heard of it and didn't know if doc did either. GREAT. Turns out when I saw the doc that he had been a "follower" of Dr. Rapaport and spent much time at the SPecial Coagulation Lab at UCSD...yet his staff was oblivious. So sad. I might do some extra research to distinguish if there are and what differences exist, but mostly, I just wanta stable INR.....Warfarin is, unfortunably, essential for LIFE, but it gets worse and worse to deal with for me....it is shocking to see your entire leg has turned black/purple and disgusting, and there is nothing to do but wait until the episode is over (5 massive hematomas
since first fracture in 2008 + 3 back surgeries. Now I was just diagnosed with AVN AVASCLAR NECROSIS of shoulders, and it is a result of the blood not getting to shoulder joints. It is tragically painful and miserable and losing use of my hands and arms for many many things, is just baffling. Maybe the biggest enenmy is aging (I'll be 70 next year)....I thoughtI'd had EVERYTHING possible, but never imagined dead shoulder bones...which occurred suddenly out of blue with pain. Once visibleon xrays, it is past treatment except surgery, but surgery is not ano option with my APS....50% chance of not making it through perioperative complications. Surgery works fine, but the work will not heal. Round and round. Hope I haven't gotten everyone confused....well, it's the brain fog!!!
PS MY major suggestion is to keep that INR between 3-4 which has been the conclusion of all knowledgable prof's I've found, and when it isn't, there are predictable and big repercussions......(TIA's and Hemorhagges mainly)....
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