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Discussion Starter · #1 ·
hiya all

i am new to this site

i am 37 yrs old and in april 09 my finger tip on my right hand went black went to gp who sent me to local hospital and after ecg test chest x ray and scan

they found out i had a blood clot in my right subclavian artery which was also narrowing

to clot the story bit shorter i had a bypass of my subclaivian artery in june09 but sadly 5 hrs after the op it cloted again was referred to hematology who i saw august took bloods

fast tracted onto warfarin

today i had the results and the hematologist thinks i have lupus anticoaglant

wasnt born with it

so now confussed as to what i can cant do

thinking why me etc
 

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Hello, welcome and hugs :hug:

It sounds from what you have described that you may well have the lupus anti-coagulant in your blood.

Confusingly it is not an indicator of lupus itself but of APS (aka Hughes syndrome or "sticky" blood). APS is relatively common in people with lupus - around 30% of lupus sufferers also have APS but it can also exist alone and be a primary, rather than secondary, disease.

Usually, once diagnosed and treatment started, the condition is relatively easily treated but like all auto-immune diseases it can vary in severity.

Here's a link with some further information on APS

http://www.hughes-syndrome.org/

We have a lot of members here with secondary APS (and a few with primary) so feel free to ask any questions you may have.

Bye for now,
Katharine
 

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Hi and welcome to the site. It must have been a huge shock to you. I am 37 and have lupus and APS as well as a few other things. I am on meds for these and they do help. How long have you been on the warfarin? Is it helping you?

What did the haematologist suggest regards treatment and care?

Katherine has explained about the blood test very well, and as she says feel free to ask any questions. Our members are very helpful and friendly. The site is a great place to find info and support.

Take care

Deb
 

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Discussion Starter · #4 ·
new to site

hematologist said warfarin long term if not for life waiting for my bllod to stable on 2.5 ...test last week was 3.4

also said they would normaly do another test to double check etc but as i am on warfarin cant do it

i shouldnt get another clot but if i do then my inr levels would be up to 3 and might have to take asprin as well as warfarin .... all i did was turn 37

3 yrs ago i found out i was born with spine bifida occutla and have arthruits in my spine

i am finding it hard to get my head round it

as in jan 09 i had some discolouration on the back of my hand went to gp didnt know what it was then march 09 my two fingers on my right hand went cold and my right foot swelled up ..water retension dr did full blood clount lungs kidneys etc all clear ... my two fingers still cold


i do have 1 question

lupus anti-coagulant is that primary or secondary?

sorry trying to understand it

seeing hematologist in 6 mths
 

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Hi again,

Lupus anti-coagulant is simply the blood test that can indicate that particular clotting problem. It is only defined as primary or secondary depending on whether it is the main disease or secondary to another like lupus. The blood test doesn't change anything in that decision and I would even say that it is not particularly important whether it is secondary or primary as the treatment and need for follow up are the same.

Usually the blood test is carried out twice (6 weeks apart) and in order to have an APS diagnosis the results need to be positive twice and one needs to have suffered a "clotting event" (which is your case). You may not have had that blood test twice due to the urgent need to put you on warfarin which would affect the results. I would think that with what has been going on with you that they are thinking APS but it would be nice if docs would explain and put names on things so that we can at least learn about them and get our heads around the idea!

Arthritis in your spine sounds painful. I have little spots of it in my neck and spine but thankfully not too widespread.

I hope that helps a little :)

Katharine
 

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Discussion Starter · #6 ·
thanks

yes yesturday appointment was 30 mins long and said lupus and see you in 6 mths and warfarin prob for rest of my life

oh and i have been very lucky

going to dr this week as my right leg plays me up if i dont have pins needles then i have cramp and have like scaly on inside thigh besides back of my hand

i am so glad i found this website , even nicer if dr could give booklet to say what it is what to expect etc

i know certain things i got to avoid on warfarin etc but what can i do with lupus what to look out for etc

thats for the information given
 

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Hello valleylass

I'm sorry about your clotting problems. It's very annoying to be told how lucky one is, isn't it, aargh, so condescending

Are you sure that you really do have a diagnosis of lupus too?
The "lupus anticoagulant" is called that because the antibodies were first identified in lupus patients but plenty of people have these antibodies and APS ( antiphospholipid syndrome) without having lupus.

If you have lupus as well you would be put on a medicine for that.

Bye for now :)
Clare
 

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Discussion Starter · #8 ·
all dr said i have lupus anticoagulant

didnt mention further medcatition ( bad spellin sorry )

only got to stay on warfarin and if inr drops below 1.8 i get to have clexiane injections as well

and if get another clot then will be asprin and warfarin

cant do 6 week test as on warfarin

so now 24 hrs later i am still confussed

scar stating to get itchy where surgeon did bypass
 

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Discussion Starter · #9 ·
thanks to Katharine link

i now now what the thing is on back of my right hand is .....


livedo reticularis, and the 2 fingers on my right hand are still cold so circulation i think has gone from them
 

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Hi and welcome to the site!

I notice that you have said
'dr said i have lupus anticoagulant'
This is a blood test not an illness! This test is used to diagnose APS (otherwise known as Hughes Syndrome). The test name is very misleading and beinf positive for 'lupus anticoagulant' does not mean or dignose anyone with Lupus!

It seems that you have been given the correct treatment being positive to lupus anticogulant - warfarin!

Is there anything else other than the name of the tests that leads you to believe you have Lupus...like the symptoms of Lupus and other bloods tests?

I have added a link so that you can ltake a look at what symptoms can happen with Lupus! http://www.uklupus.co.uk/lsymp.html

This one is a link showing 11 of the criteria that can go towards a Lupus diagnoses! http://www.uklupus.co.uk/dxlupus.html

Here is a link that indicates the bloods that may be done!http://www.uklupus.co.uk/tests.html

I would advise you to take a close look at the first link and see if anything matches with your symptoms.

Take care for now!
 
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