Newly diagnosed

[Autolupus]

Hi All,

I've just joined this group looking to educate myself following a recent 2nd positive lupus test. I am waiting for a pheumatology appointment but no idea when that is going to happen so a bit concerned I am losing time on getting a plan in place. 30 years ago I tested positive for Anti Phospholipid antibodies and NK cells but not lupus so in.my mind there has always been a ? over lupus. Following a thrombosis 2 years ago antiphospolipids negative and lupus anticoagulant negative. In October last year I woke up with a sore eye which was diagnosed as scleritis but didn't get managed well, eye drops of varying strengths not sufficient to knock it on head. Now on a regime of immune suppressants and steroids which keep it in check. In the meantime anlupus anticoagulant test now positive twice.

I've read that ocular inflammation can be the first presentation of lupus. Anyone else had similar involvement of their eyes? Thankfully vision not affected too much.

I am in London, any recommendations for lupus centres of excellence?

[addai]

Hi and welcome. St. Thomas hospital ,and Guy's Hospital, specialises in lupus.Good luck though, their waiting time for appointments is long. Take care, x

[KayHimm]

You have a lot going on. With your anti-phospholipid antibodies positive twice now and your prior clot, you have a right to be concerned. Patients are usually put on a priority list. Since your GP wouldn’t be able to address this issue, you may be seen sooner. It is worth asking your GP to see if they are concerned about your not having seen a hematologist or rheumatologist yet. I think you are correct that the best place for you is at a lupus center where there lupus/ APS experts. Your GP might push to get you seen.

Best of luck. A member was just diagnosed with scleritis. I will message her to make sure she sees your post.

K

[Autolupus]

Thanks, I wasn't sure if I need a lupus specialist or a rhematology specialist. Given the double anti coagulant positive tests I've checked out the centres of excellence but given the wait times I have decided to see someone from one of the centres privately. Got an appointment for two weeks time so hoping to get some reassurance about what's going on.

[michaellasmith Administrator]

Hi Autolupus!

Welcome to the LUPUS UK Community Forum, I hope you are finding it useful so far. I am sorry to hear you are feeling concerned regarding your recent test results, I have attached below some links that you might find useful to read before your next appointment:

lupusuk.org.uk/publications/

lupusuk.org.uk/getting-the-...

I have also attached a link to the ‘LUPUS UK centres of excellence’ page on our website below:

lupusuk.org.uk/centres-of-e...

If you would like more information about lupus, you can request or download our free information pack using the link below:

lupusuk.org.uk/contact-us/

You can also call our helpline for advice on 01708 731251, which is open Monday to Friday 9am until 5pm.

Warmest Regards,

Michaella 😊