Vasculitis UK

Could this be vasculitis?

Hi, I am after some advice if possible. Two years ago I had an issue with my health. I woke up with horrendous rib pain and a headache with a fever. Blood tests taken and CRP elevated. Urine test done and blood and leukocytes no protein or bacteria. Treated with antibiotics for uti. A week of feeling very unwell and rib pain continued with fever and then diarrhoea. Admitted to hospital under the Respiratory team I think my Oxygen levels were off and I had pain on breathing deeply. Also pulse 100 bpm. Lost a stone in weight and felt very nauseated. Had tinnitus symptoms and a rash on my elbow. Also I had very small red then purple bruises that appeared whenever I have a flare of this illness they come on hands and feet and then disappear just as quick. I also have a very odd tingling in my hands that feels like that in between pins and needles feeling where you are just experiencing the feeling coming back and this usually happens st night during sleep. I also have Rheumatoid Arthritis my RA consultant did some blood testing at the time I think the ANCA and all negative. I am undiagnosed and have never been the same since. Really struggling to find out what is going on. I have had CT scan/ chest X-rays and abdominal and pelvic ultrasounds two years ago when this started but all clear. Thanks for reading especially if you managed to get to the end without your eyes glazing over!

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I forgot to say that I also have sores on the inside of my nose up high in the septum I think which started when this mystery illness also started. They don't ever disappear and they bleed.

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Hi pancake123,

There are over 18 different Vasculitis variants, only 3 are associated with ANCA but you can be ANCA negative and still have an ANCA associated Vasculitis. There is also a rare secondary form of Vasculitis which is associated with RA.

It's impossible to say whether your symptoms are Vasculitis as it has many mimics. The best thing to do is contact the helpline as we can have a discussion about your symptoms and hopefully I can offer some advice.

vasculitis.org.uk/helpline

Best wishes

Lynn

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Thank you Lynn, I will give the helpline a call x

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Hello sounds like I felt before diagnosed with relapsing polychondritis. Rib pain can be due to costachondritis inflammation of the cartilage of the ribs. Best person for diagnosis is Prof D'Cruz at Guys London. No doubt could possiblybe other types of vasculusis. Speak to someone on the helpline.

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Thank you Amy. I have thought about costochondritis but I do suffer with bowel issues when the ribs flare which makes me think maybe not. I have been seen by a Gastro and had lots of bloods and scans done as well as upper and lower scopes with biopsies which were also normal. The whole thing is so frustrating as something is going on with my esr elevated and CRP during a flare. I am going to my Gp next week about my nose sores as the side of my face by the bridge of my nose is slightly swollen constantly now and pain under chin hopefully he can shed some light on it. X

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Hello relapsing polychondritis is associated with lots of other autoimmune disease. Gut problems occur with me too when I have a flare. I haven't been scoped as was on steroids when suggested but had faecal calprotectin levels done which confirmed there was a gut inflammation. Speak to someone on the help line. This is above most GPS.

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Hi - just in case this is useful - I too have nose sores and other similar sounding symptoms including GI, spasms while swallowing, pricking and tingling in arms legs and face, wet cold legs plus. I now have a clear positive ANA and raised IgG but no specific antibodies e.g. Ro, La or ANCA, anti CCP etc - apart from high inflammation and Creatinine, trace blood in my pee and UTIs, purpuric rashes on my legs that come and go and constant tinnitus plus Sicca.

I was misdiagnosed with RA initially, then rediagnosed with primary Sjögren's last year by lip biopsy and other positive blood markers including persistently high inflammation markers, ESR etc. My GPs and rheumatologists have all suspected some form of Vasculitis to be in the mix of extras to Sjögren's but so far this hasn't been confirmed. Meanwhile they tell me persistant high inflammation is a characteristic of Sjögren's because of very concentrated blood.

A friend who had been previously diagnosed with RA for years was then rediagnosed today with primary Sjögren's by the UK Sjögren's expert. So I'm just putting this up as a possibility in case you also have Sicca with your RA.

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Thank you Twitchytoes, it is interesting to know that your friend was misdiagnosed and has now been diagnosed with Sjorgen's. I have been tested for Lupus and had the Ro La bloods but they were negative. My consultant says that I am an unusual case as my disease is asymmetrical in the way it affects my joints. I did ask if it could be something else and not RA but I was told it is definitely RA as I am anti ccp positive and RF positive but I could have something alongside the RA. It's all so confusing isn't it? From what I can make out tests results for these autoimmune conditions can change with time anyway?! Thanks for the info and glad you are finally getting the right diagnosis!

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