So, here I am again with yet another little thing coming my way since my diagnosis UCTD . I always feel lucky as really my life has been majorly normal since my diagnosis compared to some of the people on here who seem to have a really hard time. However, since i started this journey, little by little I get new things to continue to worry me and cause me anxiety which just does not help me getting better.First reflux now this. Just got back from seeing the dermatologist who looks after my lupus as I have suspected SCLE but nothing is clear yet. My ANA and Anti Ro came back positive again as expected. However, to my surprise, 3 months ago my LAC antibody came back positive too. That was a bit of a shock to be honest. I am now going to be tested again to ensure it was not a temporary thing and then if I am not wrong, they'll do another test and if both are again positive i will have to deal with a diagnosis of APS. Any info from any of you dealing or going through this would be helpful? Do you have APS if you have only one of this types of antibodies or you need 2? Some bits i have read say that only one is enough but my doctor seemed to say that if i only have this one, I won't need treatment. If both antibodies come back i'll need warfarin for life... He says just people with LAC rarely get blood clots unless they definitively have APS and as long as I am not pregnant I can lead a normal life. It is still so daunting to deal with.
Lupus anticoagulant antibody: So, here I am again... - LUPUS UK
also does this mean that my disease starts pointing towards SLE?
Hmm I have this (not the Lupus anticoagulant but another one of the APS markers, which is mildly elevated, plus I had mildly blotchy skin, but it's since got a lot better). Apparently hydroxy is an anticoagulant so my medics felt that was enough for me, though they'll be testing again in 12 weeks. Any other symptoms of APS?
I heard from people on the APS site that they only prescribe warfarin if you've had a clot, but as always check this and different docs probably have different opinions. Otherwise the next level is a baby aspirin etc etc.
Hey thank you for your reply. As far as i know i have no symptoms of APS and not on hydroxy. Doc says that aspirin is not that good with APS so will see what they prescribe if it comes back positive again. Let us know how you get on in 12 weeks!
Like you I'm diagnosed with UCTD and a few years ago I tested positive for the lupus anticoagulant which shocked me. I was re- tested like you are going to be and it came back negative so fingers crossed it will happen for you. Keep us posted and good luck. X
Aw thank you misty14 glad to find a fellow sufferer (although not glad you have this shitty disease!) And glad it came back negative for you. Yes it's a bit scary from going to a mild disease to life threatening blot clots! Good to know there is a bit of hope although lately, nothing turns out like i hope! Are you on any medication? So far i am not even taking hydroxy
I love your name, very positive choice!. Thanks for your lovely reply. How long have you been diagnosed with UCTD!. Have you always managed on no medication?. It's good your being checked as these illnesses can change. I take daily steroids, always trying to reduce the dose and it's not easy!. Good luck for your bloods. X
Aw thanks! It's from a song and it's more to do with the fact that lupus doesnt like certain lights but at the same time yes it's uplifting i guess yes. i'm lately not that positive 😂 i was only diagnosed in Dec 2016 so early days. I also kinda diagnosed myself a bit early with very few sypmtoms so i think someone else might have missed it. My husband says i should've stopped reading and live in blissful ignorance! But I just pushed for a diagnosis with a couple of skin issues mostly. Obviously i was terrified afterwards. Doc said the key is how i develop in the first 2 years but i am a bit unsure about this as i think on normal circumstances it' would not been picked up until more serious symptoms appearded so this 2 year thing is probably a bit unreliable in these circumstances. The doctor says many people stay within the minor spectrum of this disease but i sometimes think he's just trying to keep me calm bless him. I know people who go online normally tend to have more severe issues hence the need for support but i struggle to find people with milder CTD related issues on here. Everyone seems to be battling through some serious stuff and going through life changing diagnosis and nd taking pretty hardcore medications, plus the diseases seem to always be progressive rather than stable. It's scary.
No wonder your struggling with all this, must have been such a shock to be diagnosed so easily, some it takes years and not so long ago either for you!. It's a lot to process and come to terms with but you've done the right thing joining this forum!. Do agree with you that mostly ones who join are having a difficult time and want support but the really poorly ones are not here because they can't cope with doing the forum!. I'd also like to reassure you that I've had a lot of different symptoms over 30 years taken lots of medication and my diagnosis despite all this has kept to mild form. They tend to class lupus major organ involvement as the most serious form of the disease!. Hope this helps a little and you get good blood results. Keep us posted. X
Hello. I'm afraid I cannot help you out, as I don't have APS. I have tested negative every time , but I wanted to say that I hope the next tests are negative for you and it's just a one off. Fingers crossed.
There are three test for APS, LA, anticardiolipin and B2GP1. To have a diagnosis they require bloods to be positive twice a minimum of 12 weeks apart and a clinical event (3 or more miscarriages, clot, stroke etc). It can be elevated for a couple of reasons and then go to normal on next test.
Usually if no clotting event has occurred they will just have you on anti platelet medication like a baby aspirin or Hydroxychloroquine sometimes both with another one added in depending on how strong the antibody tests are. Usually at the moment and certainly with specialist centre at guys they won't put you warfarin without a clotting event but all haemotlogists are different.
APS antibodies are common in lupus patients. I have SLE as well as APS. I am what they call triple positive in high titres. They feel I have had a small Tia and so many suspected clots they couldn't find and I am not on warfarin. I take 3 anti platelets. But it's affecting my brain so there is an argument between nuerologist, haematologist and rhuemy on what they want to do. Haemotolost thinks it blood flow and wants me to trial anticoagulation, rhuemy and nuerologist want another specialist to check its not antibodies to the brain, but I am already immunosuppressed so I dont know.
There is a group on here called sticky blood, Hughes syndrome (or the other way around) that are a great bunch and can help with any queries.
under slicc criteria for diagnosing SLE, LA under then immunologic list comes under the Antiphospholipid antibody qualification. But that's up to rhuemy to decide the rest of your stuff and if it's lupus and secondary APS or not primary APS with something else
HI Thereisalight ,
If you would like more information about APS, I'd recommend getting in touch with APS Support UK - aps-support.org.uk/
There is also a community here on HealthUnlocked at healthunlocked.com/hughes-s...
Well, please tell your consultant that people testing positive only to lupus Anticoagulant can and do get clots. I did - in my internal jugular vein (in neck) and which I'm told are extremely rare in people who don't have cancer or take illegal drugs. That clot was the clinical event along with 2 later LAC tests that lead to my diagnosis of APS. They usually just call it APL until you present with the clot. Also, in Australia anyway, they will not prescribe Anticoagulant UNTIL you get a clot. I'm on Xarelto permanently. You will need 2 LAC tests done 12 weeks apart and unless you have other relevant symptoms for APS, if the next test is negative it should be fine. I don't think they'll put you on warfarin on the basis of just 2 positive tests. It's a drug only to be used with extreme caution. But necessary for some.
Thank you. I think he was trying to just be reassuring as i was obviously shocked and he knows i get a lot of health anxiety at the moment. Trying to stay hopeful since i was fighting a h pylori infection when i was tested i think so maybe that made results weird.. clutching at straws yes but since i cannot do anything, this will hopeflully make the 3 wks wait more bearable! Will let you know how i get on!
Thank you all for your responses. I will let you know how i get on !
For those following this, the 2nd test was negative so for the moment, I'm ok regarding this!