Blood test

[Scandal]

Hello, like everyone i am having a hard time getting diagnosed and I'm waiting for appointments, just wondering what a positive beta 2 glycoprotein test means i have had 2, thanks

[Lure2]

Hi,

Did you mean you have had two Beta-2-Glycoprotein 1- tests positive? Have they tested for Kardiolipin-antibodies and Lupus Anticoagulant-antibodies also?

[Scandal in reply to Lure2]

Yes 2 positive beta 2 glycoprotein, i don't know about the other ones it was just a letter they sent me,

[MaryF Administrator in reply to Scandal]

Hi, it means you have passed an antibody test indicating you have Hughes Syndrome/APS. Usually three tests are done, not everybody passes all three, I normally pass two out of three and same for my children, although for years we were seronegative. The charity website contains lots of information, under the section for Hughes Syndrome, not only does it explain an awful lot but under 'main tests' you can see all the tests: ghic.world/

MaryF

[Scandal in reply to MaryF]

Mine are said to be moderate but they have recommend a tablet for lupus, please help.

[MaryF Administrator in reply to Scandal]

Let us know where you are located, if in the UK a list of specialists is on the right hand side of the forum under 'pinned posts' and plenty also on the front of the charity website, in the link in my last reply. It is important that you have a medical consultant to help both yourself and your GP manage your condition. MaryF

[Scandal in reply to MaryF]

Thanks, i an in Northern Ireland and the GP doesn't know anything about behcet's disease or aps and i have to wait months for the rheumatologist appointment.

[Lure2 in reply to Scandal]

Hi, I understand this came as a chock for you but please do not panic. If you have got APS it is very good that it is diagnosed early and some people have antibodies without having any APS-symptoms. Autoimmun illnesses can somtimes be difficult to diagnose and treat and it is important that we get the correct diagnose and treatment.

What symptoms do you have?

As Mary says you have to look for a Specialist as that is very important for us to have. So few Doctors know APS.

Ask for a copy of the bloodtests you have had (!) and please stay with us here. So many knowledable and friendly persons here to help. This is a very good site for APS and I live in Sweden but have been here for at least 7 years now.

[Scandal in reply to Lure2]

Thanks, my symptoms are all behcet's related i have never had a blood clot, i ask doctor for blood results but he didn't give them to me, help please

[lupus-support1 Administrator in reply to Scandal]

I am sorry to read this because you need not just a rheumatologist but someone who is an expert on Behcet! Not all rheumatologists are expert on SLE or Behcet's! It's often the case that we have more than one autoimmune conditions.

With good wishes,

Ros

[HollyHeski Administrator in reply to Scandal]

Lupus anticoagulant antibodies blood test is for diagnoses of Hughes/APS and doesn't mean you have SLE Lupus.

What tablet have they advised?

Hopefully this will be a anticoagulation tablet to thin your blood until you see your Hughes/APS specialist?

[Scandal in reply to HollyHeski]

Hydroxychloroquine, is that a lupus tablet, thanks

[KellyInTexas Administrator in reply to Scandal]

Hello,

Greetings from Texas .

Looks like we are all coming in here to help you out from around the world!

Lure ( Kerstin) from Sweden was an admin here for quite some time and has taken a little break for a while to rest, but she is phenomenal and has years of experience. You can really consider her still an admin due to her knowledge and experience. She is kind enough to still help us greatly!

Plaquinil indeed is a tablet to help with lupu and lupus spectrum illness like APS and Sjogrins syndrome. It addresses mainly the ,” aches and pains” of joints and muscles and can alleviate perhaps some fatigue in some patients ( I think...)

APS/ Hughes syndrome is considered to be ,” on the lupus spectrum.”

I like to think of it as “ the clotting cousin of Lupus.”

APS and Lupus are definitely related. Some doctors say they are cousins. My doctor says they are more like ,”evil fraternal twins!”

The good news is... you’ve caught it! Red handed!

You will be amazed at how much better you will feel when you are medicated with the proper medication.

However...

I’m not sure we are on the same page as you yet.

These tests names are very confusing. Let’s take this and break it down. You were given the charity website:

ghic.world/

Have you had a clot?

Why did your doctor suspect you had APS? Why were you tested?

In other words, are you also being sent to a hematologist to be started on anticoagulation?

[Scandal in reply to KellyInTexas]

Thanks to everyone for your help, i have never had a clot, the rheumatologist thinks i hve behcet's don't know why he done beta 2 glycoprotein but after the first lot of tests they didn't think i had lupus, but they don't tell me very much and my Gp didn't know what the test was. My beta 2 glycoprotein test was 105.

[Scandal in reply to Scandal]

I also have elevated levels of C3 C4, sorry I am not sure were i am posting, maybe the wrong place,

[Lure2]

What you have to do now is to read on the ghic.world as Mary says to understand a little more but also talk to the Hospital that took the positive Beta-2-Glycoprotein 1-tests twice and ask for a copy of the bloodtest or your Doctor appointment there that day.

First of all find a Specialist of autoimmun illnesses. It may be a Rheumatologist or a Hematologist. Be sure it is a Specialist knowledable of APS!

We need anticoagulation for our sticky and thick blood!

Ask your GP if it is ok that you try a Baby-Aspirin once a day. Only one (75-100 mg) Take it together with food for your stomach. That is what they do to start thinning the blood just a little but it is not an anticoagulation-drug. You may feel a little bit better with that to start with.

[Scandal in reply to Lure2]

The hospital won't give them to me and i can't find anything on that website lupus, thanks

[Lure2 in reply to Scandal]

I am sorry but I do not understand why you should not have a confirmation if you may have a positive diagnose of APS. Was it your Rheumatologist who took the bloodtest then you should call his secretary or ask your GP to help you as this can be important for you to know.

[Scandal in reply to Lure2]

It was the rheumatologist and i phoned the secretary and about 4 weeks later I got the letter to say my tests were positive but she did not tell me what the figures were or if it wad aps, still not sure if the behcet's is confirmed, thanks

[Scandal in reply to Scandal]

Also the report that was sent to gp in December said i had elevated C3 and C4, but i don't know what that means either and am really sick and really scared,