i'm 35 & suffer with urticarial vasculitis, is there other people on this site of a similar age who also suffer?

[pickle]

[Lupylass]

Hi there! I'm 40 and was diagnosed at 37. My symptoms are controlled now on treatment.

How are you doing?

[pickle]

I've been diagnosed for 8 1/2 yrs now, for most of this time it has been well controlled but recently I seem to have a lot more symptoms and they are now investigating my lungs.

[RichardE Volunteer]

Hi,

I was diagnosed with hypocomplementemic urticarial vasculitis a couple of years ago. I'm 49 now.

My lungs were definitely affected at the height of the illness; wheezing, breathlessness and occasionally coughing up blood. These weren't really the main problems for me but fortunately all my symptoms are now well under control with Pred and Mycophenolate.

Are you still on steroids / immunosuppresants or over the 8 years have they weaned you off them ? I'm guessing you might be experiencing a bit of a flare ?

[pickle]

Hi, thanks for replying.

I was prescibed steriods right at the very beginning but only for a very short time since then it has been kept under control with mainly hydroxychloroquine and naproxen and over the last year also azathioprine.

When I was first diagnosed my kidneys were affected which is now under control.

Three weeks ago I had a lung function test and my consultant wasnt happy with the results but I am now still waiting to find out the next step he mentioned scans/xray but wanted to discuss it with someone else, not knowing is whats scary.

Do you get a lot of joint pain?

[RichardE Volunteer]

Hiya,

At the height of my illness I had a couple of CT scans, one was specifically for my chest. If you've not had a CT scan before, don't worry. The scanner is just a big donut shaped Xray machine and the scan itself only takes a few minutes to do.

I seem to remember that they did one with me on my back and one flipped over on my front. They talked about "sparkles" (I think) on the images that indicated damage done by the vasculitis. However my chest problems might have been atypical since I had other issues at the time.

I had joint pain before they started treating the vasculitis but have fortunately not had it for a long time now. After 6-9 months on the Pred and Mycophenolate all my symptoms were under control. I've been reducing the Pred and am now down to 5mg, still on 3g of Mycophenolate.

[geoscott0292]

Hey my name is George I am new here. Just got diagnosed last June. Not under control yet. Nice to meet people in the same boat. Do you people live in the U.K.?

[RichardE Volunteer]

Hi George, I'm fairly new here myself although I've been diagnosed for about two years now. I think most of us are from the UK, I'm from Yorkshire. Whereabouts are you ?

[geoscott0292]

I am in the U.S. in the state of Minnesota. This is a great site. Nice to run into people that are going thru the same stuff.

[RichardE Volunteer]

It's good to have you here George. I've found it to be a great site to get feedback from all the folk going through similar problems.

Hope you get your condition under control soon. All the best,

Richard.