How long until you were dx?

[Woodsyartist]

I know I have not introduced myself yet but was looking to see how long it took for some to get dx with WG.
I live in a more rural area and think I have finally found a few Dr. who are willing to look at my symptoms
and are investigating the possibility of WG. (Luckily) my symptoms are not as severe or immediate as I have
heard from some people, but it definitely affects the way I live day to day. Just wanted to know if it is typical
to have so much wait time between referrals/tests/etc.

[Pete]

I was fortunate. From disease onset until diagnosis was about a month. I changed family doctors about two weeks after first symptoms (persistent ear infection, night sweats, and crushing fatigue) because we had moved and also changed insurance. I was admitted to Ohio State University's Medical Center where about 20 docs worked on me. After four days in hospital, they backed into a diagnosis of wegs. It was another month before I was feeling better. Initial treatment was 150 mg/day ctx, 60 mg/day pred, 1 bactrim tab/day.

[Dirty Don]

Mine is similar to Pete's...took me about 3-6 months before I felt 'capable' and better again, year and a half till my numbers started getting 'normal' again. Best to you.

[annekat]

Welcome, Woodsyartist,

I'm one of the ones who had symptoms that were probably WG for 2 years or more before dx. That's because my symptoms were so similar to people with just lots of allergies and sinus problems, and I DID have allergies, so I was put in that category along with all those other cases and no thought was given to testing me for WG. If I'd known what I know now, I'd have pressed for an investigation into WG based on my unusual and hard to treat ear infection and my unexplained transitory joint pain. But of course I had no clue. It took my symptoms suddenly getting a lot worse, in the form of lung involvement, for me to get a dx.

Even people on here with pretty troubling symptoms have been brushed off by doctors who didn't think it was plausible, while really having no knowledge or experience. Sounds like you now have some more open-minded docs, and that is good. Maybe you could convince one of them to consult with a known vasculitis specialist, a list of which can be found on the Vasculitis Foundation website under Medical Consultants under the Support tab, I believe. So to answer your question, yes it is common for quite a bit of time to elapse, especially if symptoms are not as severe as some others may have.

[mishb]

Hi Woodsyartist,

Mine are the same as Anne's except I was diagnosed with RA about 8 months before WG.

WG sinusitis symptoms started in July, 2009 and was I finally diagnosed with WG in August 2010 and was then referred to specialists and didn't get in until December 2010.
A sinus biopsy was ordered which was done in day surgery in Feb 2011 and follow up and results and WG meds started in April 2011.
If you don't have health insurance here - every new specialist appointment and operations have a waiting period up to 8 weeks.
Thankfully I wasn't at a bad stage and was already on strong anti inflammatories for the RA, which didn't really hit the spot - but pred certainly did.

I hope you don't have WG Woodsyartist.......but, we are here for you if you really do need to join the club

[Wegetarian]

It took me about three weeks. Assuming I count that it started from my nose getting clogged up. At first I got allergy drugs, then antibiotics. After the third antibiotics and the small amount of cortison did nothing I was sent to a specialist who took biopsies and sent me home. Following week I got worse and was taken to a hospital and then they took a lot of blood samples and were fairly sure I had WG three days later. The next week the biopsy indicated it was WG.

Although I had a hay-fever since May, and back then my nose started bleeding much more frequently. I din't really pay attention to that as I've had hay-fever for years. Today I figured the cortison injections I got for an operation in June might have been the reason I my nose felt better while I was at the hospital for the operation. So perhaps my symptoms started then, dunno.

[drz]

My first symptoms appeared at least three years before I got diagnosed with Wegs. First was nasal crusting and bleeding for over a year and then many months of joint pain which became more and more severe. After that the new symptoms evolved much faster and became much more serious quickly.

[whatthewhat]

Welcome to the forum; I look forward to reading your introduction.

Our daughter was probably sick for a couple of years, but was very sick for about a month. She was admitted to a hospital thru the e.r., & since it is a very big, good teaching hospital she had teams of experts working on a diagnosis right away. She went to the hospital Tuesday night and Saturday morning we were told the diagnosis. The main wait was due to waiting for test results - the rheumys felt that it was probably Weg's fro

[whatthewhat]

(Sorry) from their first exam of her. (But they had lots of experience with Weg's. )

[NikkiNicole]

One year and almost 6 months! I was diagnosed 7/31/13 and it was a year and a half on 08/12/13 so almost the full 18 months. Mine is not as severe as others and I had a rheumy who didn't want to call it because my kidneys weren't involved. Thankfully, I've switched doctors and am being treated. It affects me daily ... the fatigue, the painful nasal crusts ... Coughing, etc.
I hope you get answers soon!

[annekat]

One year and almost 6 months! I was diagnosed 7/31/13 and it was a year and a half on 08/12/13 so almost the full 18 months. Mine is not as severe as others and I had a rheumy who didn't want to call it because my kidneys weren't involved. Thankfully, I've switched doctors and am being treated. It affects me daily ... the fatigue, the painful nasal crusts ... Coughing, etc.
I hope you get answers soon! Nikki, I'm so glad you got the new doc! Not calling it Wegs because of no kidney issues is truly ignorant. A lot of us have no kidney issues. We may in the future, though, especially if we don't have docs who will treat us correctly for the Wegs that we do have!

[drz]

Nikki, I'm so glad you got the new doc! Not calling it Wegs because of no kidney issues is truly ignorant. A lot of us have no kidney issues. We may in the future, though, especially if we don't have docs who will treat us correctly for the Wegs that we do have!

That is almost as stupid as the internist who told me I didn't have diabetes and wouldn't ever have it because I was too thin even though my blood glucose level was 40 points over normal and my mother had just died from it. it took several more years till I finally got that diagnosed too even though I had seen doctors for several years for the main symptoms. So it isn't just the rare diseases they have trouble diagnosing. They will only diagnose what they are considering even if that isn't correct.

[Woodsyartist]

Thanks to all of you who replied. I am still "undiagnosed" but continuing with a series of appointments.
The Ear Nose and Throat did not see much to biopsy and was concerned with creating a false negative,
basically leaving it to a lung biopsy in the future as most of my symptoms center on my lungs and breathing......

I think I am one of those "slow" developing cases.