En Coup De Sabre with possible Lupus, APS & Sjögrens
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.