Hi I am in the early stages of diagnosis &at present have been told by letter its skin vasculitis. But have had nasal/sinus issues since no

[sleepy60]

2013(virus) have been really ill, exhausted.gp did tests blood, protein in urine vasculitis rash on lower legs, feet. All bloods ok except esr, iga high, igm low. Chest xray ok. Concerned urine ok by time went t hosp & they will ignore previous results & do nothing.

[xxbluebooxx]

Have you been referred to a rheumatologist? I am newly diagnosed too. I had a positive skin biopsy. The docs think I have the skin type of polyarteritis nododsa. But I have had every investigation under the sun to rule out other organ involvement. (Just waiting to hear if kidneys are ok)

It is very important that they rule out systemic vasculitis as it can damage organs and make you ill quickly. If needed get a second opinion and ensure your docs are used to dealing with vasculitis. Good luck.

[sleepy60 in reply to xxbluebooxx]

Have seen rheumatologist all he did was look at my rash, blood tests, chest xray.

[PMRpro]

If you have a vasculitis it is probably an autoimmune condition - and a characteristic of autoimmune conditions is fatigue and feeling as if you have flu. Protein in the urine is fairly non-specific too, you can get a positive urine protein with a urinary tract infection and it is really only higher levels that raise flags. The high ESR is showing you have some inflammatory issues so they know something needs investigating and they are doing that. I'm afraid you need to be patient and see how they decide to proceed with treatment. In most cases the treatment is damping down the immune system in some way with medication to relieve the symptoms - which medication works best depends on the type of vasculitis.

[sleepy60]

I have seen rheumatologist he did blood tests & cxray. App he forgot t do esr again! Says my gp cud refer me t ent dept if needs be! So if my gp has t do referal it cud be months.

[Ull_on_Umber]

Hi,

New to this myself, and have been Ill for many years.

My Co Morbidities.... are a long list.

Things are now making a little sense I will not now give up.... having listened to the professionals and taking what they say as read, I now have an opinion of my own and feel until proved different I am on the right track.

My first diagnosis was Chronic Fatigue Syndrome many years ago (12), the many since and before do fit in with vasculitis, I have been diagnosed with skin vasculitis.

So until they say I am OK and just having another unknown episode in writing, then I will fight my corner with the vasculitis.

I have permanent damage to my heart after my last episode, no previous cholesterol or valve problems, my lungs ( shortness of breath and coughing up blood) and kidneys ( blood in my urine) both came into play.... still waiting for OP appointments after 4 weeks

Bit long winded and self centered sorry but base line is look after 'You'.

Kind Regards Charles

[matswesslen in reply to Ull_on_Umber]

Sorry to hear you have been ill for many years and your symptoms are so very like my partners who had been ill for 15 years and was diagnosed with everything from Leukemia to Tuberculosis and many other illnesses in between before being diagnosed with WG Vasculitis and Neutropenia. You are not being self centred or long winded. I am afraid that you have to fight your corner continually with the medical profession as I personally do not think they have a handle on this horrible disease. What are your Co Morbidities? Good luck and I wish you well. Jenny

[Ull_on_Umber in reply to matswesslen]

Hi,

Well, just back 29 Apl 2014 from seeing one of my Rhumy's team, not sure of the diagnosis but still jumping through the same hoops. Systemic? Vasculitis (by Skin Biopsy) is the opinion, wide range of options though...

My first problem was with my blood, 2 bad attacks of septicemia 12 years ago, then what appears to be standard signs of Chronic Fatigue Syndrome.... Flu like symptoms. White blood cell problems, hemo for Lymph node checks and surgery, what was there has now gone.

Chest problems, testicles, erectile dysfunction, eyes, hearing, skin, Joint pains could be gout!, muscle spasms, numbness of feet legs arms and hands, hospitalized on several occasions due to 'unknown episodes' mainly eyes head and ears, coughing blood, sneezing blood, blood in urine, abdominal pains on several occasions 'unknown episodes' and have been hospitalized on the recommendation of the Infectious disease unit in London no not measles.

Co-morbidities; Systemic Vasculitis, Bi Lateral Hearing Loss, COPD, Chronic Fatigue Syndrome and Heart Failure.

My heart and lungs are now permanently damaged, still no ENT examination, no Broncoscopy, not sure about the kidneys if I turn yellow that may indicate something, well maybe.

Liver looks OK, and all the hype on alcohol I would think that would go first!.

Rhumy is now getting further investigations for me, should be within the next 4 - 6 weeks, that was what was said last time........... did not happen.

Still learning, and will continue to do so, big style.

Hope you are both OK, kind regards,

Charles

[Lupylass]

Hello sleepy60.

Are you under follow up with your rheumatologist?

I started with vasculitis affecting my skin, but over the months and then years other things have developed, both in symptoms and in blood tests. Sometimes it does take time for these things to appear (and in some instances they won't ever appear). A good relationship with your medical team is a good starting place, understanding what they're thinking and why, and in what circumstances they'd want to see you sooner than planned.

It can be really frustrating, especially when there are unanswered questions about our diagnosis and future, but I found it easier to try to 'go with the flow'.

[AndrewT]

Dear sleepy60,

First of all what sort of rash have you got? Can be a good 'indicator', of vasculitis. Secondly I really do hope your kidneys are alright-mine were completely f...erm... shot, by it. I had a kidney transplant, last July, after four years on dialysis (three times a week). There is a fairly reliable 'marker test', for most vasculitis, might be worth your while to ask for this to be checked.

Sorry to hear that you have been so unwell, for so long, hope that you feel better soon-yes I know that sounds a bit patronising; didn't mean it to. I like the name 'sleepy60', kind of sums 'things' up, doesn't it. I hope you don't mind me asking but are you a boy, or a girl? Not that it really, or actually, matters- just curious/nosey really!

Anyway I wish you well, please do let us know how you get on, will you?

Very best wishes AndrewT

[sleepy60]

Thanks t u all for your replies. I am a female! For my sins! Awaiting Ent referal but wont hold my breath! Gp been really great feeling a little livelier but cud sleep for England. Still keep feeling nauseous & breathless & rash comes & goes. Gp has inferred it Will taken time to sort.

[Sadeastern07]

WG? possible ?

Hope you sort it soon

Kim