Antiphospholipid Antibodies

[Charliebear68]

Hi guys,

Just had a telephone appointment with one of the GP's to talk over my bloods requested by the dermatologist. Everything negative apart from antiphospholipid Antibodies which is positive. She did try to explain what these markers are and mentioned lupus but I didn't really take it all in - I'm not great at taking on board any kind of info at the minute. I did say that I was very disappointed with the service I'd been having and she then suggested that i go and see her at the surgery. At least I can have my partner with me when I go.

I think I might have hypermobility as reading through an old post, I did a bit of research and I have backwards elbows, can flex my little fingers further than 90°, put my palms flat on the floor with straight legs, I could (too painful at minute) bend my thumbs to touch arm. I have always thought I was just bendy - even had trouble at chiropractors as he couldn't get me to crack as I was 'too bendy' we just laughed. I'm really not laughing now. Would this be a secondary/overlap or am I running before I can walk?

I would be so grateful from you all if you could give me some advice. Should I mention my bendyness? What should I ask GP with regard to next step? Is it wise to change surgeries now or should i wait a bit?

Thanking you all in advance - your support means the world to me.

Charlie xx

[MaryF]

HI I am on this forum as I have Lupus, but I am also one of the Administrators from another forum on here which is for Sticky Blood-Hughes Syndrome, this is a forum for the Disease which is called Hughes Syndrome or APS, Antiphospholipid Syndrome, which is a sort of cousin of Lupus. MaryF

[Charliebear68 in reply to MaryF]

Thank you - sticky blood sounds scary. I'll have look on your forum.

Charlie 😓

[PMRpro]

The NHS page about antiphospholipid antibodies is very easy to read:

nhs.uk/conditions/Hughes-sy...

and so is the arthritisuk page:

arthritisresearchuk.org/art...

Keep a notepad handy as you read them and write down your questions if you can't find an answer easily. And yes - always mention any signs or symptoms that you feel are different from other people. They are all part of the big picture the rheumatologist needs to consider.

As MaryF says - there is also a forum for the antiphospholipid syndrome.

[Charliebear68 in reply to PMRpro]

Bless you - I'll have a look at the links. You're fab.

Charlie 😚

[lormiccro]

Hi, I'm in a similar position to you, had a punch biopsy last spring confirmed SCLE, started on hydroxychloroquine, however, have also tested positive for Lupus anticoagulant twice now. Consultant Wants me to have 3rd lot of bloods done soon to confirm I definitely have the antibodies. From what I understand Lupus anticoagulant can appear transiently in healthy people hence the reason for multiple testing. I have some hyper mobility in that I can put my hands flat on the floor, but can't twist my elbows back! Good luck in finding your answers.

[Charliebear68 in reply to lormiccro]

Thanks - I'll keep you posted.

Charlie