At what age were you diagnosed with vasculit... - Vasculitis UK

Vasculitis UK

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At what age were you diagnosed with vasculitis? Please leave any appropriate comments.

Suzym2u profile imageSuzym2uModeratorVasculitis UK239 Voters

Please select one:

29 Replies
macrstq profile image
macrstq

Why does the age end at 69?

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to macrstq

It doesn't no one has voted who is over 70 years of age yet 😊

macrstq profile image
macrstq in reply to Suzym2u

Thanks! Mx

London37 profile image
London37 in reply to Suzym2u

I was 72 years old when I was diagnosed with unspecific large cell vasculitis. (I am now 75) I had felt vaguely unwell for a number of years, but it was attributed to idiopathic causes. Then I had a small blood clot in an artery in my arm. They did a biopsy of the artery and discovered that I had large cell vasculitis.

ldwilliams profile image
ldwilliams

But there is no option for over 70

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to ldwilliams

There is, I can see an option for 70+

ldwilliams profile image
ldwilliams in reply to Suzym2u

Ah, then I didn't see it at the time and of course cannot now see the poll as I have already voted. Thanks

Juneelizabeth profile image
Juneelizabeth

Think I've had it since 24 but fobbed off with diagnosis of

Allergies ( none ever identified)

Fybromygia ( resolved after 18 months)

Shoulder immobility ( tested for lupus ANA and other tests raised but Lupus dismissed )

Diabetes ( diagnosed as type 2 but most likely autoimmune type LADA and now managing as a type 1 )

Bowel cancer ( operated on given Stoma had chemotherapy given all clear but consultant cannot rule out genetic cause )

Neuropathy and disabled mobility and balance problems after Chemotherapy and poorly managed diabetes during Chemotherapy

Aug 16 presented with classic signs of GCA treated urgently with steroids

Temporal biopsy confirmed diagnosis

Finally have they got it right ???

Now on steroids but this makes management of the diabetes a challenge

Amazing I'm still here

Like a cat I think I've used up a lot of my nine lives

karens62 profile image
karens62 in reply to Juneelizabeth

I joke about that too - kind of dark humour. I'm a cat that's used up at least 3 if not 4 of the 9 lives [it depends on whether you count the recurrent pneumonia when I was 5-7 years old].

Loujon profile image
Loujon

Although my Neurologist says it was misdiagnosed 10 years earlier.

Tashe profile image
Tashe

Had a T.I.A. (mini-stroke) at 55 years of age. Four months later a routine blood test showed kidney function of 27 ex Gfr. Two months after that diagnosed with MPA. The specialist estimated that I had probably had the disease for at least a year, with the TIA as a manifestation of the problem. The only other symptom I experienced was tiredness, which I put down to getting older!

Tashe

amms43 profile image
amms43

Diagnosed in 2007 but I am sure I had had vasculitis since 1998 but the GPs considered it a neurotic mental condition despite the rashes and other symptoms.

nanaC profile image
nanaC

I was 2 weeks away from my 69th birthdY

cazy-g profile image
cazy-g

59 yrs on diagnosis after a 6 month's acute struggle with health issues .65 yrs now and doing O.K. with treatment .Rituximab and pred

Macedon profile image
Macedon

I was 62 yo when diagnosed with MPA, in 2006. However, I had very similar symptoms some 10 years earlier which remained undiagnosed at that stage. I have since discovered that this is not an unusual experience.

hakem profile image
hakem

Feel lucky that I was already so old when diagnosed!! Think I may have had symptoms for over a year!! About 8 months prior to the Vasculitis diagnosis----was diagnosed with COPD!!

I was diagnosed with RA aged 36. Nothing else happened for years, then I got cancer. After my treatment everything happened. Including the Rheumatoid Vasculitis aged 63.

jaspe8r profile image
jaspe8r

Diagnosed with Churg Strauss Vasculitis 2004. Various symptoms had been apparent for approx. 10 years prior to this but cause unknown.

nicholls profile image
nicholls

Diagnosed early 40s but from birth have had symptoms and unexplained illness

JacquiM profile image
JacquiMVolunteer

I was 54

deebeau profile image
deebeau

I was diagnosed in 2013 for Vasculitis and Rhumatoid arthritis at the age of 60 years old. But I know I had it for at least 5 years prior to being diagnosed with it. So I really don't know how long I've had it. I just know it is a hard thing to live with. I have had chemotherapy treatments for it. The Doctor said it is in remission but I still feel very bad. I'm weak from the chemo and I still have to take prednisone 20 mg a day and a pain pill every 8 hours to get me through the day. So I don't feel like the chemo worked for me. I would appreciate some feedback from some other people that have had both. Vasculitis and Rhumatoid on how chemo has helped you.

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to deebeau

Have you asked the question in the community ?

AndrewT profile image
AndrewT

I was thirty-five.

BronteM profile image
BronteM

When I was diagnosed an ultra sound scan on my arms showed that both my arms and both my shoulders had several blockages in the arteries. 97% blockage in my left arm and shoulder, 93% in the right. Each blockage was surrounded by a neat web of capillaries that had grown up to take blood round the blocked parts of the artery and keep my arms and fingers working. When I talked to my consultant about this, she said that it would have taken a long time for the arteries to block and the capillary system to develop and take over. So, although I was actually diagnosed in my sixties, I can probably push the start of my Vasculitis back about fifteen years!

AllyGY2013 profile image
AllyGY2013

GP let slip that they had 'suspected it 12 years earlier' but had been waiting for more symptoms or bloods to show.

Pity they didn't tell me then, because little things I didn't think important might have helped with diagnosis.

Then had flu that wouldn't respond to treatments or go away and a new, young doctor I kept seeing didn't realise or suspect vasculitis so had 6 months plus before formerly diagnosed when symptoms worsened.

11 years old

VasculitisQueen profile image
VasculitisQueen in reply to clevelandnative64

I was nine when diagnosed with HSP, then when I was 12, I was diagnosed with MPA, ANCA associated vasculitis

clevelandnative64 profile image
clevelandnative64 in reply to VasculitisQueen

behcets for me

ReidyWG profile image
ReidyWG

I was 57 but had spent 5 years trying to identify the cause of my numerous inconveniences.