Anyone have this?

[Georgie-girl]

Hope someone here can help me. I have had sjogrens syndrome for many years but recently, various doctors i see have been mentioning small vessel vasculitis. Stuffy sinuses, crusty bleeding nose, chest and stomach pain from hell, palpatations, optic nerve damage, joint and muscle aches and most recently a nasty rash on my lower legs. I also have breathing problems and a ct scan which showed small vessel inflammation in the lungs. My rheumatologist however dismisses this as my anca is negative and my esr is not that high. I do already take steroids and methatrexate for my sjogrens though but I have got him to do a leg rash biopsy next week so fingers crossed I get some answers. My first question is does this sound like vasculitis without a terribly high esr or could it be just the beginning of it? Secondly, i often come over light headed, wobbly, with a headache and I start to feel really ill. When this happens, my face and cheeks goes bright red and I have awful pain around my cheeks and eyes with thumping temple and side of head pain and I feel sick. I had to fly to Rome recently for a family wedding and when this happened on the plane it scared the hell out of me. My hubby put it down to painful sinuses and the cabin pressure but it happens all the time even when at home. It just like washes over me randomly. OK one minute and ready to go to A+E the next.

I thought of GCA but that's not small vessel and my gp, ent, neuro all mentioned small vessel. Does this happen with small vessel vasculitis? What is it?

Thank you all.

[PMRpro]

This may help you sort out your thoughts:

news-medical.net/health/Vas...

You can also have non-ANCA associated vasculitis - and it can be part of Sjogren's which seems sometimes to come as a surprise even to doctors.

Maybe you need to push for referral to a specialist in small vessel vascultis - it is all very well "dismissing" it but he should be explaining his thought process and what he thinks the road ahead involves.

Where are you?

[Georgie-girl in reply to PMRpro]

Thanks Pro. I value your input as I know many of these things affect you too. I managed to secure an appointment with a specialist yesterday, a prof Pusey at hammersmith. He was recommended by vasculitis uk. He was nice enough and seemed interested in what I had to say, but I feel that again, with no significant inflammatory markers, I'll be dismissed. He has asked me to see ENT at his hospital in a couple of weeks though so hopefully they will find something. Sadly the leg rash wasn't there when I saw him, it had gone, but I showed him pictures and he said "hmmmm possible". Because my airways are clear and fine, my lung problems are being dismissed and because my kidney bloods are ok my blood and protein in urine test has been dismissed. I thought that urine was an earlier indicator of kidney problems than blood but I guess I was wrong. He did do a chest xray though which was apparently normal and showed no inflammation. To be honest, they can call it what they like but I remain convinced I have some form of small vessel vasculitis and it's scary that people get dismissed with symptoms like this. One thing I keep hearing and that really angers me is when doctors say how rare it is so you're unlikely to have it. GGGrrrrrrrr. Guess I just have to wait till something significant shows itself in my blood.

Thanks again Pro.

[PMRpro in reply to Georgie-girl]

Yeah - it's rare until you happen to be the rare person who develops it. Then it is 100% ...

[LH44]

Hi, I have many of your problems with Sjogrens/UCTD. Plus... My Ophthalmologist thinks I have GPA (Wegners) whilst my Rheum agrees with me, more Relapsing Polychondritis. Has anyone checked your sinuses? Mine were badly inflamed which was making my eye symptoms worse.

[Georgie-girl in reply to LH44]

Hi LH44, I did used to see an ear specialist about my dizziness and they arranged physio for balance issues. However, when she saw my nose recently at a follow up appointment, she immediately referred me to a rhinologist as she thought there looked like some inflammation and crusting going on. I'm awaiting that appointment to come through.

[LH44 in reply to Georgie-girl]

That's good, hopefully you get your appointment soon. I ended up with a few weeks steroid drops but as soon as I switched to the spray I have the same sinus problems!

[Georgie-girl in reply to LH44]

Do they actually work though? My gp has given me sprays in the past that did nothing but make my nose dry and burn. I guess it's about finding what works for you.

[LH44 in reply to Georgie-girl]

The steroid drops worked, spray does not!

[Suzym2u Moderator Vasculitis UK]

You may find this page on the VUK website helpful - it discusses ANCA, you can also print the page off as a pdf and share with your doctors vasculitis.org.uk/about-vas...

[Georgie-girl in reply to Suzym2u]

Thank you suzy it was very informative.

[amms43]

I have many of your symptoms apart from those in your head area. Lungs, palpitations (atrial fibrillation), leg rashes, muscle and joint pain, light headed, wobbly, feeling ill and fatigué all very familiar and diagnosed as microscopic polyangitis and leukocytoclastic Vasculitis. Is your rheumy a Vasculitis specialist? It took me a long time to achieve a diagnosis. I hope you find a suitable specialist.

[Georgie-girl in reply to amms43]

Thank you amms43. My rheummy is not a specialist but I have managed to get my gp to refer me to one now so hopefully I will get some answers. I just dont think Im getting anywhere because my bloods are always so flipping normal. Thanks again.

[AmyS1]

You need to see a vasculitis specialist at a large centre. Contact the helpline for details.

[2534]

Hi Georgie-girl

My symptoms are not the same as yours in many respects but they are the same in others - low ent, no anca- , small-vessel vasculitis on sural nerve biopsy, negative on skin biopsies. I emailed Prof David Jayne at Addenbrooke's Hospital in Cambridge out of the blue and on the off chance he may need people for his research. Amazingly he replied! I attach a Word document with a copy of my email to him and his reply. I have left out some personal details but not medical. I have now received Rituximab and feel a fair bit better. He is probably the best vasculitis specialist and he is probably the most likely to get you RTX on the NHS.

I recommend you seeing him even if you need someone more locally.

all best now, 2534

(cannot see how upload documents and will have to send before going to another page or message will be lost! will get back to you with doc soonest)

[Georgie-girl in reply to 2534]

Thank you so much 2534, I will definitely think about emailing him if I dont get anywhere.

Thank you

[Hidden]

I can't really answer your question, but I have RA and Sjögren's syndrome and also Rheumatoid Vasculitis. Not saying this is what it is, as your rheumy would have recognised it perhaps, but just thought I'd mention it.