Lupus Jessner's High RF & Graves Disease

[Ajontheedge]

I think this is more an info post, rather than questions.. Simply because I've been lurking for years looking for answers and maybe this will help someone. Maybe..

I was unwell for about 6 months, extreme fatigue and joint pain. Despite a high RF I was told I didn't have RA. At the same time, 3 months of being unwell, a mark appeared on my face, about 1cm x 2cm, slightly darkened skin. 5 months later it had an extreme reaction and blistered after being outside. My GP said it was an insect bite.... Hmm, No!

A later biopsy said it was Lupus, my Dermatologist said it wasn't, it was Jessner's Infiltrate. A second Derm treated it as Lupus and steroids really helped with the flares, but then my original derm said additional bumps were milia without even looking at photos of the new random bumps I get... So I'm not convinced. They are like puffy swellings.. Given the waiting times, I think she was just keen to get me off the books.

In the last 2 years, I've had a frozen shoulder (treated), graves disease (now in remission) this face thing and extreme fatigue along with knuckle and knee pain. I'm being treated with hydroxychloroquine via rheumatology, but my bloods are negative for lupus and scleroderma. Still high RF, still postive anti-CCP, still high inflammation markers. I was put on a course of oral steroids last year and felt like I had my life back .. for a bit .. NHS said is have an appointment in 4 weeks, it's now been 8 months...

A few weeks ago, I noticed a lump on my chest, in line with my shoulders. Thymus Gland?

It's no fun.

[weathervane]

I have Sjögren’s and I have always had random rashes. For last couple of years I’ve had swollen patches which last for months, initially on my face but now on my shoulders and elbows. I was referred to dermatologist and I had a biopsy which confirmed Jessners .

I was prescribed high dose steroid cream along with a lower dose to use after 3 months to manage patches as they appear. The Jessner may or may not eventually stop 🤷‍♀️

It is annoying as the patches can burn and itch but hopefully it will eventually go away.

[MoonMomma5]

So sorry you are going through it. Having complicated illness is so difficult in so many ways. I just wanted to say that the hump could be cortisol related. I think it is rare and called Cushing disease. Worth a look. Don't let them fun you off!!