u/GodKnowsHowPetsSound

There's a link on their Instagram stories to another account where they appear on some podcast (BDA Baby?)

Kay says "I was feeling so scared and didn't have anybody to go to that was going through the same thing. I was given Lupus for a reason and I feel like that reason is to talk more about it and be somebody that other people can look to so they don't feel alone"

Doesn't her mother also have Lupus and was diagnosed years ago? Does she not count? People don't get given Lupus because they're an influencer with an overinflated sense of self worth. You're not a chosen one for some philosophical reason. I don't think anyone is making ground breaking progress in raising awareness on Lupus, not even charities. Kay only having "Lupus" when there are not holidays, photoshoots, plastic cups to sell etc is not even a real life representation of Lupus.

The whole fridge reorganisation and ADHD thing was very annoying too.

Does anyone know in what circumstances a rheumatologist would test for anti-P ribosomal (or why they would refuse to?)

I know anti nuclear antibody patterns aren't really used by rheumatologists as an indication of anything, but I looked into mine a little because it's "cytoplasmic speckled" pattern and seemed more unusual. I can see from several sources that for that pattern, it indicates testing for anti-P ribosomal. I asked my rheumatologist about it (I didn't mention the anti nuclear antibody pattern) because of my long, complicated & unresolved psychiatric history and CTD symptoms and she said "we don't usually do that..." and changed the topic of conversation. I also have fluctuating kidney function - my GP didn't investigate why or refer me when it was at it's worst, just diagnosed me with CKD and now eGFR is in 60s, I'm considered "normal". I noticed I have never been tested for anti-chromatin or anti-centromere either.

I'm in the UK, so mostly dependent on what the NHS decide to test for, but I cannot find anywhere that tests for anti-P ribosomal privately (alone or part of an extensive ENA panel). I am currently looking for a private consultant, but having difficulty finding the right one because I have some complicated/rare symptoms.

I also can't get any clarity on whether APS antibodies need to be monitored, beyond the testing twice 12 weeks apart rule at diagnosis, when you're not on any anticoagulants. If you're not triple positive, I would have thought you would just in case the other one turns positive too, even if the levels of the others don't necessarily indicate levels of severity. I'm diagnosed with mAPS, but currently on 200mg Hydroxychloroquine.

Sorry this is a bit long - I need to learn how to edit more! So, I have been diagnosed with En Coup De Sabre for the past couple of years, although I believe it's been there for about a decade. It was only when I was having systemic issues that I realised what it was. My rheumatologist first diagnosed it, but I've seen two dermatologists since who confirmed it.

It's on my forehead in the centre and I have some extending onto my scalp along the top and around the back. There are possibly one or two more developing on my forehead and two slightly suspicious looking dents on my chin that are fairly recent. I'm diagnosed with Undifferentiated Connective Tissue Disease and microvascular APS, but symptoms and test results seem to point to Lupus, APS & Sjögrens.

Dermatologist seems to think Lupus too and thought it was a bit ridiculous I'm not on immunosuppresants. He wrote to the rheumatologist to ask them to consider it. Haematology think I have microvascular APS (mAPS), but as anticoagulation hasn't improved my symptoms, they have stopped them and discharging me! There's no clear guidelines on treating mAPS, but immunosuppresants are usually more successful. Rheumatology told Haematology I don't need immunosuppresants, despite having not seen or spoken to me for 8 months (I contacted them twice 6 weeks ago and was sent an appointment in June instead of a phone call to discuss anything).

Rheumatology seem to be doing everything they can to convince everyone there's not much going on and it seems unfortunate I'm stuck with a set of rare symptoms/conditions (I have Erythromelalgia and Raynaud's too). I'm only on Hydroxychloroquine right now and she even said I could stop that if I wanted. I'm probably more worried about blood clots and strokes right now, but I also don't want to end up with several indentations on my face. I'm finding the whole thing quite distressing now as well as feeling very unwell. I am looking for a private rheumatologist more specialised in Lupus & APS.

Has anyone else been in a situation like this or have any suggestions on what to do? Get back in contact with the dermatologist? He said he didn't feel like it was his place to initiate it. This is the NHS in that UK and I already asked for a second opinion a couple of years ago, so I don't feel like I can keep doing that.