Lupus SLE also Lupus anticoagulant

[mona1163]

I was diagnosed with Lupus nearly 5 years ago. I was 48. Lupus SLE rheumatoid overlap. My ESR was 69 my neutrophils were 0.1. Was put on plaquenil and steroid and the methetrexate. But I was taken off them because my neutrophils had improved until methetrexate was introduced. I was also given co codomol, calcium + Vit D, Vit D. Now I have been told my platelets are clumping so I had more tests using citrate, ESR was down to 24 and I was told ESR signifies the disease is less active. But I feel so tired and to walk is so painful. My calf feels like it's going to explode and I find my self stood like a stork with one leg bent up until I feel it subside. But it returns as soon as I start walking again. My foot also goes numb. The outer peripheral of my foot and my toes go completely numb. I have had a lot of falls and I am frightened to go anywhere on my own in case! My memory is absolutely chronic and I suffer with terrible headaches (I don't suffer with headaches as a rule). I have now been diagnosed with thrombocytopenia and positive for Lupus anti coagulant. Neutrophils are never mentioned now so I presume they are normal. I was given aspirin but my stomach was in agony and I was vomiting blood. I wasn't given anything else. My bones are very sore to touch and joints are still painful but not as bad as they were. I seem to be developing more auto immune diseases but nothing is being done. I stopped all meds but 20mg a day steroid and I have now tapered myself off them. I just had blood tests repeated in citrate and EDSA. Is Lupus anti coagulant and sticky blood the same thing and if so do I now have hughes syndrome? Sorry it's so long I have shortened as much as I could! My brain is fried!

[Manofmendip]

Hi there.

Lupus Anticoagulant is not a disease, it is one of the blood tests that are done.

Generally, if you have two positive tests, twelve weeks apart, for the same test that is a positive diagnosis of Hughes Syndrome/APS.

You need to be seen by and APS consultant as soon as possible, there is a link to a list of them in our pinned posts, on the right of this page.

Best wishes.

Dave

[Angeleyez in reply to Manofmendip]

no ive got lve got lupusantigulant a blood disorder that threw a clot to my lung.

[MaryF Administrator in reply to Angeleyez]

Yes LA, is a test used to diagnose Hughes Syndrome/APS, in other words sticky blood and full medical name Antiphospholipid Syndrome, there are a number of tests used and this is one of them. MaryF

[Angeleyez]

ive got lupus anticogulant disorder that caused a clot in my lung

[MaryF Administrator in reply to Angeleyez]

It is important that you have a specialist that understands this disease. MaryF

[Manofmendip]

I reiterate what my colleague and I have said, Lupus Anticoagulant is one of the blood tests for APS/Hughes Syndrome, it is not a condition in its own right.

[Lure2]

Hi Angeleyez,

I live in Sweden and I have Antiphospholipidsyndrome (Hughes Syndrome). I also have Lupus Anticogulant since 14 years. Lupus Anticoagulant means that you have got APS (Antiphospholipidsyndrome).

Before I got my diagnose of Antiphospholipidsyndrome, I was tested for 3 different antibodies (several times). The 3 antibodies they test are a) Kardiolipin (IgG and IgM), b) Beta2Glycoprotein1, c) Lupus Anticoagulant.

If you get ONE of those 3 positive ( twice with 12 weeks apart), you get a diagnose of APS (Hughes Syndrome). You should also have clinical evidence of course.

Try to read as much as you can about this illness. I have read "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms and how it is to live with this illness. The book is not quite new, with the latest oral drugs in it, but very good to understand this rare illness that so few Doctors know and understand. Try to get a Specialist!

Best wishes from Kerstin in Stockholm

[mona1163]

Thank you for your reply. I am living in UK. I have been diagnosed with Lupus with rheumatoid overlap since 2011. I have tested positive for Lupus anti coag.

[amy1808]

Sounds like you should be on Warafrin , I was exactly the same . It does help but still have bad days . Chin up xx

[GinaD]

Our communal experience here is that there are lots and lots of doctors out there who sadly do not understand --sometimes do not even recognize!-- Sticky Blood, aka APS, aka Hughes Syndrome. So, as many of us have experienced, it is vital --VItAL! --to consult with a doctor who has has earned a spot on one of our prefered doc lists!

Many of these blood tests were named decades ago before doctors got a grasp on why this or that blood test was associated with this or that disease, So yes, there is a relationship between testing positive on the lupus antigoagulent test and having a diagnosis of lupus and/ OR Sticky Blood. But its not a clear equal mark association. Which is a great part of the reason why it is, again, vital, to consult with a physician experienced in the successful treatment of Sticky Blood.

The good news is that a successful treatment is possible - in fact quits likely! - and a return to normal life usually follows.

Gina

[Elfie1]

Hi mona1163 I too started with thrombocytopaenia nobody knew what it was they just said I had Itp. This went on for a long time, so find yourself an APS specialist as soon as you can , and get your painful calf checked out Asap. All the best Elfie.

[mona1163]

Thanks for all your replies. I have been diagnosed with Lupus and also tested positive for Lupus anti coag (12 weeks apart). I have received a letter to see a vascular specialist in Llandough (I am living in Cardiff South Wales) so hopefully that will sort the leg pain out! Since being diagnosed with Lupus nearly 5 years ago, I have developed different blood disorders (eg Neutropenia, Thrombocytopenia, now Lupus anto coag). My neutraphils were down to 0.1 in the beginning but they must be ok now as they are never mentioned now. But my platelets are now low. I now suffer with headaches which I never suffered with in my life! I am blinded by science at this stage! I was unable to take aspirin and no one seems to be bothered. My mother died of a pulmonary Embolism in 1978 aged 47 which is why I am so worried!

[Lure2]

Hi again,

I think you should take that possibility and reply APsnotFab who wants to give you a name of a recommended Specialist of APS and also Lupus in your area.

You have APS (Hughes Syndrome) and a vascular Specialist could be ok but what you do need is a Specialist of this rare autoimmun illness.

I started Warfarin (which I did not want to) after i had read "Sticky Blood" (see my previous answer to you) and that book saved my life probably. Warfarin has been my life saver as i have too thick blood which has to be properly thinned by anticoagulation. After that (now 5 years) I have had no more microembolies and neurological symtoms and what is damaged in my body, is done before I started anticoagulation.

Kerstin

[Hidden]

They named that particular antibody "Lupus Anticoagulant" because fifty percent of patients who are diagnosed with SLE Lupus also have "LA!" I might be wrong about this, but I remember reading that somewhere. Just like the Anticardioliphin antibody test is named that weird name because the antibodies were first discovered in beef/bovine hearts in the late 1940's. So, as you can see, a lot of these antibody names are quite outdated and misleading. Also, from what I've read, Anticardioliphin can also be activated by Beta 2 Glycoprotein antibodies and cause "LA" like activity in the blood. It is all so terribly confusing. But with a high ESR rate, you could also have SLE Lupus, or it could be the RA that is causing your ESR to be out of range. You should be placed on Warfarin as a precaution. If you have APS without any other autoimmune disorders, it's called primary APS. But in your case, being that you also have another autoimmune disorder, you are considered to have secondary APS. I hope I gave you the right information. If not, I'm sure MarryF will be able to correct me. Hang in there, and welcome to the group.