New to Vasculitis, Advice on symptoms and diagnosis please ?

[Foss]

Last year I developed a burning painful rash of red spots on both legs, feet and arms. I have SLE, Sjogrens, Raynauds and APS so thought it must be connected with one of those. Rash lasted 7 weeks but as it took 7 months to get an urgent appointment at St Thomas the rash had gone. But on the evidence of photos I took and history, both rheumatologist and dermatologist have given a diagnosis of vasculitis unspecified and told me I need an urgent biopsy if/when rash comes back.

That's fine, but past 3 months I've been feeling much worse. Main problem is extreme fatigue, worse than a lupus flare and early morning nausea and weakness in spite of taking anti-emetics all the time. My lower legs burn and are very painful only relieved by painkillers and a warm bath and elastic stockings. Because I am feeling generally ill most of the time and particularly early morning I'm getting a bit concerned and wondered if this sounded familiar to anyone and if so do you think I should be pursuing this with my GP now ? Apologies if this sounds wimpy but I hate going to GP especially as he is reluctant to treat because of attendance at St thomas Hospital and by his own admission he knows nothing about vasculitis ( just a thought, but if I were a GP with a patient who had vasculitis I'd make it my business to find out about it) I am back at St Thoms in April.

I'd be grateful for any advice, thanks

Foss

[PMRpro]

There is no reason at all why you shouldn't call your consultant's secretary at St T's and ask for your appointment to be brought forward and explain why. It often works - particularly if you say you will take a last minute cancellation and are willing to drop everything and go when called. Your consultant has said they want to see you again if the rash comes back, it hasn't but you are getting worse - and, lets face it, if it is the vasculitis the GP is going to be about as much use as a chocolate teapot!

As you have discovered, GPs think "urgent" means "now". No - it means sooner than a routine appointment would be. If routine would be 9 months - 7 months is earlier! If you want it done "now" you call and ask for an emergency consultation. Or call and send the patient to A&E (admissions and emergencies) with a letter clutched in their sweaty little paw!

Vasculitis is a complex business - and there aren't even that many consultants who know vast amounts about it. I agree with you that if I were a GP with a patient with a rare disease I'd be looking it up - but I don't have a vanishingly rare autoimmune disorder and they STILL don't look up what they don't know. Nor do some consultants!

[Foss in reply to PMRpro]

Thanks for your response, I'll ring the hospital!

[Galaxy2]

Hi Foss

I also have Sjogrens and possible SLE. I was diagnosed with vasculitis a few years before it started casing me any real problems, it started off with purpura rashes on my lower legs and feet and I was told it was curtaneous vasculitis. However a few years later I started feeling really unwell, so so tired and had a wide spread rash, the itching of which drove me nuts. I went to my doctors several times and wish in hindsight I'd insisted on being referred back to my rheumatologist sooner as I went downhill. That's really not meant to worry you but what I'm trying to say is, you know your own body and if its not right, don't like I did feel like you are making a fuss and regret not being more pushy.

I go to St Thomas's too and find all the consultants there so helpful and with the right combination of medication am leading pretty much a normal life now. Have you thought of changing your GP? I have such a good GP now and it makes such a difference.

Good luck

Jenny

[Foss in reply to Galaxy2]

Hi Jenny 14. Thank you, you're right we do know our own bodies best and as I'm sure you've learnt you have to become an expert in your own condition. Glad things are fairly under control for you at the moment though, but did you have to have a skin biopsy for your diagnosis and if so did you have visible rash at the time?

Do you think your tiredness was related to the vasculitis or the Sjogrens or most probably a combination of the two.

Thanks again and keep well

Foss

[Galaxy2]

Hi Foss

I never had a skin biopsy, I did see a dermatologist when I had a purpura rash but he thought it wasn't in his domain, once I had seen a rheumatologist he diagnosed me straight away by just looking at my legs. The hives rash I developed was at a later stage and I remember one doctor saying to me it was indicative of what was going on internally (ie inflammation on the skin giving an idea of inflammation on the inside). I developed neurological symptoms after that and the tiredness was extreme then. Difficult to say if it was Sjogrens or vasculitis or even lupus causing the tiredness as I think their symptoms all overlap each other.

Who do you see at St Thomas's?

Jenny

[Foss in reply to Galaxy2]

Hello Jenny 14

I see Prof T Vyse for SLE now and Dr R Groves in Dermatology, both very good, but I used to see Dr deCruz at the Lupus Clinic but sadly no more, but I am very grateful to be going there at all.

I am curious about your neurological symptoms, do you feel like saying more?

My blood results often don't reflect how I am feeling which is very frustrating. I'm seeing my GP on Friday to have a moan and groan, but all he can do is reach for the script pad.

Thanks for responding

Foss

[Galaxy2]

Hi Foss

Have just sent you a private message

jenny

[Wellsie]

Have they run any ANCA tests in your blood work? Many (but not all) vasculitides show up via an ANCA blood test.

[Foss]

Thanks Wellsie.

I'm having bloods done next week so might know more then.

Foss