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
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JovanaS
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Yes, I did. Like you, low grade fevers and sore shoulder muscles. It did become apparent that I was photosensitive but that was after « possible autoimmune disease » like you.
ANA was positive after about five years and now only episodically.
I am positive for three cytokines - Il 6 and, I think Il 8, like you. I can look back if you want.
You may have to be watched for a while. These illnesses tend to take a while to develop.
Thank you Key I know it is a long journey towards a diagnosis but the doctors are so dismissive and that's the thing that probably bothers me the most. Did you get a diagnosis in the end?
Yes. The rheumatologist saw me when I was doing better. All tests were negative except false positive VDRL. By then I also had thyroiditis. He felt I had « autoimmune tendencies. » Wanted internist to keep an eye on me. Haha
When I develop a facial rash after minimal sun exposure, he diagnosed undifferentiated connective tissue disease.
That was a long time ago.
From the sound of it you are being taken seriously. Doctors don’t want to frighten their patients. These illnesses aren’t like fibromyalgia which are terrible but don’t cause organ damage. So try to see that this is part of their training. You are a tough diagnosis. With negative ANA and no other immunological markers they have to sort of wait and see The fact that they are testing cytokines is pretty out of the typical bloodwork.
I know it’s hard not to have a more specific diagnosis but it would be careless to make guesses with your symptoms. I was in « limbo » like you. Some people are misdiagnosed or dismissed. That is way worse.
Sorry, JovanaS. I didn’t realize auto-inflammatory isn’t the same as autoimmune disease. I am not familiar with this category but I guess it isn’t surprising that they are going to present in similar ways.
It sounds like you are being watched closely to see how you progress.
Yes all negative bloods except for dsdna which was positive and got me the lupus/sjogrens diagnosis. I have on and off knee, back and hip problems but no swelling. Funnily enough my first hot flushes/fevers started at 38. Only last 5 to 20 mins but a few times a day since then and very hot most of the night. Lighter red rash on cheeks and neck, dizziness, blurry vision, fatigue all day every day. These were all first signs but took 13 years from first signs at 38 to get the diagnosed and have some sort of positive bloods. Dr kaul at St.Grorges, Tooting recently made a statement saying that rheumatologists should not only look for positive bloods but symptoms should play a big part as around a third of us can have negative blood tests. A symptom diary and pictures can help your hospital as we sometimes forget everything that happens to us but it could be key in getting a diagnosis. Lupus uk have lots of good advice and factsheets which can help like getting the most out of your consultant appointment. I hope you get a full diagnosis soon whatever you have.
Thank you! That specific fatigue, all day every day, is so difficult to explain to the doctors. I am glad you got your diagnosis and I hope some of the new test results help rheumatologists figure out whether my condition is autoimmune or autoinflammatory.
Any rheumatologist worth their while should pick up constant fatigue means inflammation. My trouble was I was sent everywhere but to a rheumatologist. I wonder if I'd been listened to and diagnosed earlier I would not have lost a kidney or had a brain haemorrhage but that I think helped in masking what was the real problem (lupus). That's why I'm keen for people to keep fighting for their own accurate diagnosis whatever that it. I nearly lost my life and I'm grateful I'm still here and on the right medications for what I have. Actually last year my dsdna was negative too but I got a positive rf factor for the first time. Still negative for everything else. Just goes to show bloods change all the time! 🤔
Great comments. Two things I noted was your rheumatologist’s emphasis on clinical symptoms and your anti DNA antibodies with your negative ANA. I think that is a pretty important test if positive. You are apparently rare and the pathologists seem to think that is technically impossible. You have ANA but not showing up on certain testing or another antibody is cross-reacting to make it false negative.
We were lucky to have doctors who understood the complexities and stayed with their clinical convictions. I had a negative ANA for years. I have one of the antibodies that can cross-react. So complicated.
It is important to hear people’s whole stories. Vague symptoms with negative ANA is different from vague symptoms and high DNA antibodies with a clear photosensitive rash. The stories go on and on. You fought long and hard for a diagnosis. That was hard.
It took me 12 years from onset to get the right diagnosis last year at Royal Free, which I attended as a private patient from Scotland, with approval of my local rheumatologist who sent on all relevant notes and test results. The professor I saw at Royal Free confirmed that my main rheumatic autoimmune disease is Systemic Sclerosis (seropositive). But I also have seronegative Sjogren’s which was already confirmed by lip biopsy 8 years ago - but has now been downgraded on my list to Sicca Syndrome due to being seronegative.
I don’t think I ever ran low grade fevers but I know these are quite common at the start with diseases such as RA, Sjogren’s and Lupus. I had most of the other symptoms you mention and often broke into sweats, had a lifetime of severe eczema until menopause, mouth and nasal ulcers and poly arthralgia with no joint swelling. I think my sweats finally stopped around the time I got treated fully for hypothyroidism. But I’ve since gone the other way, can’t sweat and am now always cold, severe Raynauds and always low body temperature, even when I had Covid recently.
So things can and do change and as KayHimm rightly observes, many of us don’t fit neatly into diagnostic boxes. In my case the Royal Free Scleroderma professor explained that my Systemic Sclerosis has presented a-typically due to me being born inherently stretchy/ thin/ soft skinned with hypermobile tendencies / HSD/ EDS.
But it would also be worth looking into Sjogren’s, which can present seronegative in around 30% of cases, and does often start with low grade fevers due to dysfunctional parasympathetic and autonomic nervous systems affecting the lymph nodes I think. At one point recently researchers in the States were thinking that seronegative Sjogren’s could be a unique subset and auto-inflammatory in origin rather than autoimmune. Definitely worth asking about at least as this would make it part of same family as Psoriatic Arthritis and Ankylosing Spondylitis- which are classed as seronegative spondyloarthropathies I believe.
Oh my God, it must have been such a relief to get a diagnosis after 12 years! Thank you for your comment, I also have some of the symptoms you have such as mouth ulcers and severe eczema since childhood, but my main symptoms are fever, extreme fatigue, gut issues and sore throat. The thing with me and the Royal Free is that I am being investigated at the Autoinflammatory Syndrome Clinic, which is a part of The National Amyloidosis Centre and is considered a specialist rheumatology department. I was referred here by Rheumatology from another London-based hospital. Hence, they are now checking only my CRP and SAA (Serum Amyloid A) levels every two weeks at the Royal Free, and they do not run the ANA screen or other usual connective tissue disease blood tests. They aim to make a diagnosis such as Behcet's, FMF, Adult-onset Still's disease, TRAPS, CAPS, DIRA etc.. They are also performing genetic testing, but I have a feeling that nobody looked into the possibility of me having a connective-tissue disease due to my ANA being negative while I was being investigated at the Infectious Diseases department at Guy's Hospital at the beginning of the year. They were also the ones who found out that I have elevated cytokines, IL-8 and a slightly raised IL1-B, and a positive ASCA Igg, and referred me to Rheumatology who in turn referred me to the Royal Free without any tests done. I hope this will help someone who is struggling with similar symptoms as even GPs do not understand what autoinflammatory diseases are and how they differ from autoimmune ones.
Yes it was a very long diagnostic journey for me but I had to wait until I fulfilled enough of the diagnostic criteria for Systemic Sclerosis and the rest was seronegative. But at least, even misdiagnosed with RA, Lupus and then primary Sjogren’s, the treatments were broadly same so I was at lease covered for much of the time as my scleroderma evolved. It’s a rare autoimmune disease too so I’ve never come across a GP who would even have mentioned it prior to diagnosis.
In 2016 I was steered by one misguided and tick box-obsessed rheumatologist towards Amyloidosis and Behcets. Due to this and a few pointers in bloodwork -I ended up seeing a retired rheumatologist who advertised as an auto-inflammatory specialist. I think he was passed his sell by it and just spent a lot of time complaining about my lab results being outside of his knowledge because my hospital used different panels to the ones he was familiar with so that was a waste of my scarce funds!
I do understand about Royal Free because they also have one of the few UK Scleroderma clinics and are top notch for research along with Leeds. If I could go down there once a year on NHS I would but sadly devolved nations don’t offer this option so I’m lucky to have a local rheumatologist who is willing to contact and take her lead from the professor on my behalf.
I can see that, as Guys and Royal Free both share many of their specialists and labs, they would be guided by same lab results. But if you feel that your clinic isn’t repeating tests for autoimmune diseases then it would be worth asking your consultant at Royal Free I’d have thought? Even with more common autoimmune and auto-inflammatory diseases such as RA, PsA or AS - there can often be overlap and also antibodies can and do change - particularly ANA. There’s nothing black & white in the field of rheumatology. Best of luck in your quest for answers - I do hope you find them quicker than I did.
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