New to lupus

[Croyboy01]

Hi guys. I’m Danny. I was diagnosed with lupus yesterday, so I have no idea what lies ahead of me yet. Any tips would be much appreciated. Thanks.

[Greentomatoes]

Hi Danny,

You will find this a good place for information and a place to come when you need a chat or to vent.

How are you feeling about your diagnosis? I have SLE and was diagnosed in 2018.

Cheers

[Croyboy01 in reply to Greentomatoes]

Don’t know yet, I’m still trying to get my head round it. And thanks for the reply

[tree_shadow in reply to Croyboy01]

How did you end up being diagnosed. Its traditionally very difficult to get a diagnosis often takes years?

[Croyboy01 in reply to tree_shadow]

I was in hospital with blood clots on my brain. ( Venus sinus thrombosis) and it came up in blood tests. That was 9 months ago. Retested this week. But it’s Hughes syndrome. Not lupus. But they use the lupus test to find it apparently.

[Insomniacette]

Hi Danny,As someone who also got told out of the blue. I'd like to suggest you remember that a lot of the time the worst stories are the ones you find online as people who are doing ok rarely post about how well they're doing. So if you can try to keep perspective when you Google (I have to remind myself of this sometimes too!).

Lupus is very varied, some people live with it without issues and manage their condition easily, others struggle more. The worst bit is not knowing which you will be and living in the unknown. I'd also suggest not making any life changing decisions until you've digested the diagnosis properly. I made some panicked decisions immediately after diagnosis and I wish I'd been calmer and thought things through a bit more.

It took me about 3 years to fully get my head around what living with lupus would mean for me and work out what I wanted to do (career wise etc). So take your time no one is chasing you.

The great news is you've got a diagnosis so they can start treating you. People who get treated early tend to do better so you're in the best position you could be in. Hang in there and this forum is an excellent place for advice, support and friendship so welcome and ask away anytime.xx

[Villagelife in reply to Insomniacette]

Well said Insomniacette

[Insomniacette in reply to Villagelife]

😘💪

[Croyboy01 in reply to Insomniacette]

Just had the hospital on the phone there. So apparently it’s not lupus! But they use the lupus test to find it!!! Anti phospholipid syndrome. Which is another auto immune syndrome. Or Hughes syndrome. Which is easier to say. Lol. But it means I get a lifetime supply of warfarin. Lol

[Insomniacette in reply to Croyboy01]

Now I know very little about APS or Hughes but there are folks on the lupus UK forum that have these conditions as I've read posts from them mentioning them so if you want to do a new post with those in the title they might well respond to you.xx

[Jmiller623 in reply to Croyboy01]

Join the Hughes Syndrome forum. It’s all APS folks.

[Villagelife]

Hi I'm undiagnosed so can't offer any advice, I've found this to be a very friend forum and there is always someone to offer help & advice. I wish you well.

[baba]

I have attached some links that you may find helpful.

ghicworld.org/

healthunlocked.com/hughes-s...

Blood tests

1) anticardiolipin,

2) beta-2 glycoprotein I (β2GPI),

3) lupus anticoagulant.

They need to do these tests twice, 12 weeks apart, to exclude false positives.

Sending best wishes.

[Kevin53]

Please look at the LUPUS UK website for lots of free help and support. Best wishes Kevin. Chair LUPUS UK.

[Tanitani]

Find a cognitive behaviour therapist specialized in chronic illness. They can be very helpful in this confusing time

[Ingrid1234]

There’s an excellent short chpt 14 from Prof Grahame Hughes himself from his book, “A patient’s guide to lupus” pp 55-59 on APS/Hughes syndrome.

He also calls it, “sticky blood syndrome”.

It’s published by the London Lupus Centre.