Royal Free Hospital and auto-inflammatory conditions

[JovanaS]

Hi everyone,

I was just wondering if anyone has been seen at the Fever Clinic of the Royal Free Hospital.

After having problems with low-grade fevers, mouth ulcers, eczema-like rashes, extreme fatigue, sore throat, lightheadedness and stomach issues on and off for 2 years now, I was referred to Infectious Diseases who found that I have a very high level of cytokine called IL-8. All other tests were negative, including the ANA screen. After a CT-PET scan, I was referred to local rheumatology and they said that I do not have signs of a classical connective tissue disease and that it might be something auto-inflammatory.

That is when I was referred to the Royal Free, as they specialise in auto-inflammatory conditions, and they are now testing my CRP and SAA (serum amyloid A protein) levels every two weeks (both came back as positive on my third test) and also ran some genetic tests that haven't come back yet.

Has anyone had some experience with them and then got referred back to their consultant rheumatologist? I have no joint swelling, just occasional muscle pain and recent bilateral knee pain, especially when walking. I am 38 and otherwise healthy except for gastritis, a sliding hernia in my food pipe and reflux disease due to it.

Could this be lupus after all? Did anyone have fever problems without a positive ANA in the beginning?

Thanks everyone for reading the long message and any insight would be very welcomed

Best,

Jovana