Just diagnosed from Queensland Australia

G'day from rural Central Queensland, Australia.

Whilst I would rather not be writing to this forum I'm glad I've found it and, it's somewhat
reassuring to know that there's such a resource for folks diagnosed with Wegener's ...
(I know we're not call it that but I can't pronounce - Granulomatosis with Polyangiitis :) :) :) )

On reading many of the intro posts it's like seeing a visual reflection of what is exactly has
just happened to me -

I'd turned 60, NEVER been in hospital or have any more serious than a cold or flu and
not taking ANY medications. I had a very active physically demanding job, we live on a
decent sized rural lifestyle block of land where we try to be as self sufficient as possible
which takes hard work, I kept myself in shape, ate well, didn't smoke and drank little then
hey -

A few months ago I just started feeling not quite right, I knew I was knocking on a bit
but this was odd. Like many of you it started with solid crustations from my nose
followed by bleeding. I starting to feel a bit fatigued and my legs hurt like hell when I
was carrying any heavy weight, so much so that when I squatted down it was bloody
painful to get up. A few weeks later my sinuses started to hurt and I totally lost hearing
in my left ear, I was also feeling more and more and more weak so I knew something
was really wrong.

In rural Australia there is a very rare sight and that is a bloke in a Doctors waiting room
and I'm ashamed to admit I was one of them but there was something wrong so I knew
I had to see a GP.

The Doctor diagnosed sinusitis, prescribed antibiotics and steroids for me she also
(very diplomatically) pointed out, my age the fact I wasn't on any sort of medications
and that I hadn't seen a Doc in years so maybe it would be wise to do a full check up
on me, bloods, urine ... fine ok - two days later I got a call from the Doc calling me in
as she had the blood and urine results back and was concerned at what she saw, this
truly was when the blur started, she told me a lot of information which really didn't
mean much but she also wanted to do more exhaustive blood urine testing ... fine ok
three days later I got a call from the Doc recommending that I attend a hospital
Emergency Room since the more exhaustive testing had shown very concerning
levels of heavens knows (as I said it was getting blurry now). I really couldn't see why
I should go to the ER so I declined. I honestly would have felt like a fraud as the
5 days of antibiotics and steroids was making feel better. Next day another call from
the Doc saying she had been talking to the Hospital Docs about my condition and
now she, along with the Hospital Docs insisted I attend the ER, clearly something
was very wrong. This scared me so my pigheadedness was put aside and my wife
drove me and my overnight bag 100 kms to hospital.

I was in ER for approx. 8 hours seeing lots of Docs, describing how I was feeling
and saying that I was feeling like a fraud being there, clearly they were concerned.
I was admitted as an inpatient and for the next 2 days gave enough blood to keep the
vampires of Transylvania fed for a year and endlessly peeing into small jars. On the
third day in hospital I was given the news that I had contracted ? Wegener's and that
it was targeting my Kidneys, the renal (Nephrology) team then took control of me.
The head honcho of the team told me he would need a Kidney biopsy but was going
to start treatment immediately. I was put on a steroid IV drip and started taking
Cyclophosphamide orally along with a number of other drugs to control what my
body was about to get hit by.


Well the rest as they say is history. 5 days later I was released from hospital with the
gratifying news that the medical team were happy they appeared to have arrested the
Kidneys destruction but it was only the start of at least, a short term life changing
experience.

Two weeks after being diagnosed I'm home and life has changed already. I'm now
taking 10 pills a day, one of them has caused me to become diabetic (although I'm
told this will revert when I stop taking the offending drug). I've given up my job
as it involved so much people contact (the chemo drugs I'm taking has/will blow
away my ability to fight infection and I'm not prepared to take that chance ) I'm
lucky, financially I'm set and don't need to work. We kept a lot of chickens on our
lifestyle block, they've all gone, I could not in all conscience watch my wife who's
63 do all the maintenance of the flock.

I'm told it's likely I'll be on this cocktail of drugs for at least a year or two and there
are no guarantees ... but I am a very positive person and I will be eternally grateful
to the medical teams that have brought me to where I am now. I am so pleased that
they found out what was wrong with me, just not pleased what they found out.

I look forward to periodically checking in, following folks progress and comparing
notes.

Welcome Rob.

Your story very similar to most on this site with classical initial symptoms of Wegs. So glad you put the pigheadedness aside and got that diagnosis early. Glad you found this site. Some people do come off the drugs after a few years but many like myself, have been told that we will be on the drugs for life. Even on the drugs I have had about 4 major flares since diagnosis (2008) and a few minor ones but with close monitoring by the doctors, my own knowledge of the disease, educating myself on the effects and side effects of the drugs used to keep me in remission and also listening to my body, I am still here though I am forced to live a quiet life since diagnosis. I am unable to work or travel but still able most days to look after my house, cooking and on good days get out to the shops. Others have a worse quality of life than me, others much better and are able to continue work and travel. We are all different.

Wish you all the best on YOUR journey with this disease.

Rose

Welcome, Rob!!

Glad you found us, but sad you had to.

I’m 8+ years in with our dumb disease and have done pretty well managing it. Some of the key lessons for me have been:
> Become the manager of your treatment team. All my docs know that my rheumatologist (one of the world’s best at treating vasculitis) treats my GPA. They treat anything else. I keep everyone informed about what others are doing to treat me. Both hospitals I use have electronic record keeping and messaging. All my doctors can see my rest results and after visit summaries.
> Eat healthy. I eat very little processed/convenience food. I eat more fresh fruit and vegetables, natural fats (whole milk, butter, extra virgin olive oil), whole grains, fish (salmon and tuna), as well as beef, lamb, pork, and poultry.
> Get some exercise. I was in pretty good shape before GPA hit. It took a bit more than a year to get my physical fitness back. I walk 2-4 miles 3-4 times a week and participate in a Silver Sneakers exercise class twice a week. (I’m 72 years old.) I think being fit helps me keep the disease at bay and provides a sense of well-being.
> Don’t be afraid to ask your doctors why they are prescribing a medication or ordering a new treatment. Ask especially about drug interactions, side effects, and how you should feel during and after treatment. The only stupid questions are the ones you don’t ask.

I hope you continue to improve. Keep us posted about your progress...

i am very impressed that your doctors were able to figure out the right diagnosis so quickly. Many of us went for years seeing various doctors who gave us no help.

Did your hearing come back? Mine never did but the BAHA does help a lot.

Hi Drz,

Yes my hearing did come back but, since I've been put on the cocktail
of drugs I'm intermittently losing it then it comes back. The Docs have
intimated it's a likely side effect from the Chemo drug they've put me on.

Regards

Thanks Pete for your words,

I'm still a bit shocked and getting my head around it.

What you say makes huge sense and it's how I've lived lived my life already, ate well, kept in shape ... and, it's certainly how I intend to carry on, I just need to educate myself in areas I've never come across i.e. diabetes, side effects of chemo ...

I'm very much a read and learn person and whilst in hospital when the drugs started coming, I asked for any information sheets of what I was putting down my throat. All I can say is that the nurses / doctors went out of their way to supply me with fantastic information sheets (although I still struggle to pronounce some names).

As I said in my intro post I was a pigheaded bloke as far as health checks were concerned but that changed 2 weeks ago. I FULLY trust the medical team (even though it is a smallish regional hospital in country Queensland) who are looking after me and I fully intend to comply with their recommendations.

Regards

Hey Rob, its a bit of a shock, when you have worked hard all your life, and out of the blue, a spanner gets thrown at you. You are very lucky that you were diagnosed so quick, most people get miss diagnosed, and by the time someone has worked it out, a lot of damage has occurred, it took my doctors 3 months, my story is a little similar to yours, and Im a lucky one (I live in northern NSW), cyclophosphamide is used to suppress your immune system, (as its our immune system that is trying to take us all out) and try and control it quick, it was described to me when I was first diagnosed as using a sledge hammer to smash the disease down, to lessen the damage it can cause, you should be able to get retuxamab( this drug also has many other names) as it has been listed on the PBS ask your Doctor about it, It is not as harsh as cyclophosphamide, but they may use this to get some control over it and then put you on something else.
Read as much as you can here, as there is a lot of info here, and the members here can tell you almost anything you want to know about this disease, they have helped me immensely, all the best in your journey, If I can help in any way, let me know.

Regards Woz...

Hi Rob, welcome!

Your experience was very similar to mine. I was 49 and had been very healthy up to that point.

I agree your doctors did an outstanding job of diagnosing. It gives me hope the disease is getting more recognition.

Cheers!



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Hi Woz,

Thanks for your words and offer of help, I certainly intend to read as much as I can. Still a bit in shock, off to see the kidney team on Monday to discuss the most recent blood /urine so hopefully even at this early stage they'll have positive news for me. I can't thank the GP/medical teams for what they did so swiftly for me.

Regards

Hi Keith,

The medical team who diagnosed / looked after me truly did an amazing job. I think the GP who I mention was really on the ball, she picked up and pursued the crazy blood test results she was seeing. I will be eternally grateful to them all.

Take care

Hi Rob, When first diagnosed, I was seeing my GP, an ophthalmologist, a ears nose and throat specialist, a kidney specialist, a thoracic specialist, and my rheumatologist. They all played their part in getting me where I am today, I was very lucky to have such a brilliant, caring team of doctors. Its a lot to take in at first, but as the doctors have got on to it early, you should respond quick, sounds like you have a great team as well, I was 51 when first diagnosed, and have had this surprise package (wegs) for 6 years, had 3 months off work, returned to work part time, then full time ever since, it slows me up some days, but I cant complain. Dont read too much into the doom and gloom you might read on Doctor Google.

Regards Woz...

Welcome to the forum, Rob. I've been at this about as long as Pete, since about this time in 2011. But I had a delayed diagnosis of about 2.5 years.. I was under the care of a good ENT who treated me for a massive bilateral ear infection followed by umpteen sinus infections, allergies, and hearing loss. It wasn't until it went into my lungs that I got a diagnosis and began treatment with cyclophosphamide and prednisone. Those brought it under control and now I've been on methotrexate for maintenance for about 7 years and am doing reasonably well, without the energy level of before. I'm 66. Because of delayed diagnosis, I received the typical damage in my nasal cavity, sinuses and lungs, resulting in a saddle nose, permanent hearing loss, and diminished lung capacity. But still I'm better off than many others. I'm lucky enough to have no kidney involvement so far, though I'm due for regular labs to rule that out along with other aspects that must be monitored. You are indeed lucky to have had such a great medical team to diagnose you so quickly, and that the treatment is going so well. There are quite a few Aussies in the group besides you and Woz, and I know it is a big place, but perhaps you can meet some of them or at least get acquainted here. The internet is a godsend in its ability to bring together people all over the world for mutual support and friendship. I have met 4 Weggies in my area, and one of them has been supplying me with firewood out of the goodness of his heart. The quality of people who get Wegs and stick with the forum is of the highest order. So, ask any questions, someone will answer them, and continue to share what's going on with you. We are interested, and I'm glad you found us . [emoji5]

Anne

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Hey Woz ...

Dead right about Dr. Google, the Internet is is a wonderful thing, you just have to get past the 99.9% of rubbish that's on it.

The team here at Rockhampton hospital have been nothing short of miracle workers diagnosing me so quickly. I feel so so so lucky as when I read how some folks have gone years before they were diagnosed.

I intend to write to the QLD Health Minister and the Hospital board to extend my huge appreciation to all the care team that took care of me. Too often folks are quick to complain and reluctant to compliment. I know the care team were just! doing their jobs but, what a job they did for me and they should be acknowledged for the tremendous work they do.

Hi Anne,

On reading your experiences it just reiterates how lucky I was being diagnosed so quickly. I guess for me the planets just lined up starting with my GP who, clearly was on the ball when she first spotted the oddities in my blood/urine tests.

The care team at the hospital were also part of those planets lining up. They saw something was very wrong and thankfully spent days blood/urine testing, cat scanning and CT scanning me and mercifully diagnosing me with such speed that hopefully !!! the minimal damage has been done to my kidneys.

It has hit me a bit and, as I said in my initial post has altered my life/lifestyle already. I saw a renal Consultant today who indicated the signs were looking good, the numbers they wanted to go south are heading that way but, as a precaution they're keeping me on the horse ! strength steroids and check again in a weeks time. The only other indication they gave me was I'd likely be on cyclophosphamide for 6 months then all being well be on something not quite as aggressive for maybe up to 2 years ? I guess I've just successfully jumped the first hurdle in what might be a long race.

Best Regards

Rob

What a great success story from Australia!

That is my problem with the Vasculitis Foundation here in the US.
Other than fundraising, they do nothing to next to nothing to bring awareness to all the front-line physicians that encounter new Auto Immune (AI) patients (including us GPAs/wegies).
These doctors (GPA: ENTs, nephrologists, GPs, pulmonologists, orthopedics, dermatologists, and rheumatologists) are still unaware of AI and start treating symptoms and miss the underlying deadly and destructive disease.
I would think that Vasculitis Foundation would be contacting every one of these specialists and family doctors on behalf of GPA (and all other 100+ AI diseases) and put and end to this misdiagnosis/late-diagnosis madness once and for all. /(end of rant)

G'day everyone!!

Seied, I don't know much about what the VF does or doesn't do, but I'll take your word for it. I hope that since 2011, when I was dx'ed, more docs have become aware.

My ENT is a good one but I think known for his surgical skills, and hadn't seen any cases of Wegs in his career, but had seen plenty of cases of recurrent sinus and ear infections, often caused by allergies, which seemed to be the case with me.

For asthmatic symptoms he referred me to a good pulmonologist, but who had only seen one case of Wegs. When my lungs got really bad, a chest x-ray looked suspicious to him, even though it had passed the muster of the radiologist, so he put me in the hospital overnight for tests and observation, thinking I might have endocarditis, what ever that is. There I had a chest CT scan, among other things. On the basis of that, the excellent hospital doc suspected WG, but said I needed to arrange a biopsy.

Right around that time my saddle nose appeared! Talk about good timing. So I got a quick appointment with the ENT, showed him my nose, etc., and he and his nurse stayed late to do a nasal biopsy on the spot. He was sure I had WG and was very apologetic for not catching it sooner. So he, for one, now has a greater awareness about WG.

Waiting for results, I went back to the pulmy, who denied that I probably had WG! I told him about the biopsy, took my glasses off, and showed him my nose! He called the ENT, and the positive results had just come in, even though nasal biopsies are said to often be inconclusive. So he ate crow, and since there aren't any true WG specialists in my community, ended up being the one to treat me, and he did OK . I had already looked at the forum and other web resources and knew that the treatment he was prescribing was correct. And the rest is history.

This pulmy retired a couple years ago and I'm now with a rheumatologist who had seen about 20 cases of WG before me. Which still is not a lot! He doesn't do much of anything except get lab results and keep telling me to take the same meds. But he's nice and it's sufficient for now. There's always Seattle if I get in real trouble. I have told this story many times! But thought the new people might be interested.

Anne

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Quote:

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Originally Posted by annekat

Seied, I don't know much about what the VF does or doesn't do, but I'll take your word for it. I hope that since 2011, when I was dx'ed, more docs have become aware.

My ENT is a good one but I think known for his surgical skills, and hadn't seen any cases of Wegs in his career, but had seen plenty of cases of recurrent sinus and ear infections, often caused by allergies, which seemed to be the case with me.

For asthmatic symptoms he referred me to a good pulmonologist, but who had only seen one case of Wegs. When my lungs got really bad, a chest x-ray looked suspicious to him, even though it had passed the muster of the radiologist, so he put me in the hospital overnight for tests and observation, thinking I might have endocarditis, what ever that is. There I had a chest CT scan, among other things. On the basis of that, the excellent hospital doc suspected WG, but said I needed to arrange a biopsy.

Right around that time my saddle nose appeared! Talk about good timing. So I got a quick appointment with the ENT, showed him my nose, etc., and he and his nurse stayed late to do a nasal biopsy on the spot. He was sure I had WG and was very apologetic for not catching it sooner. So he, for one, now has a greater awareness about WG.

Waiting for results, I went back to the pulmy, who denied that I probably had WG! I told him about the biopsy, took my glasses off, and showed him my nose! He called the ENT, and the positive results had just come in, even though nasal biopsies are said to often be inconclusive. So he ate crow, and since there aren't any true WG specialists in my community, ended up being the one to treat me, and he did OK . I had already looked at the forum and other web resources and knew that the treatment he was prescribing was correct. And the rest is history.

This pulmy retired a couple years ago and I'm now with a rheumatologist who had seen about 20 cases of WG before me. Which still is not a lot! He doesn't do much of anything except get lab results and keep telling me to take the same meds. But he's nice and it's sufficient for now. There's always Seattle if I get in real trouble. I have told this story many times! But thought the new people might be interested.

Anne

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Yes, every one of these specialists should have GPA (and other AI) in their radar.
Vast majority of these eventually arrive at AI when AI should have been suspected at the beginning.
We all had multiple, concurrent symptoms at the onset; sinus infection, arthritis, fatigue, flu-like that does not go away, weakness, etc.
Every doctor should assess each the patient and be on the lookout for these things.

In my case, I persisted until finally the 5th doctor diagnosed me and started my treatment that very same day.
In all, it took me 3 weeks to start suspecting that what I had was not just a very nasty flu, and another 6 weeks to finally get diagnosed and avoided permanent health damage.

I went back to my ENT and GP, (two of 4 doctors who missed my set of symptoms) brought brochures on GPA and educated them; made it clear that they missed and opportunity to be real heroes.

Ed.

It was my ophthalmologist, who got onto it first, and got a blood test to check my ANCA, only a day before my rheumatologist told me she thought she new what it was and scheduled the same test as the ophthalmologist, my eyes were the telling factor he said, they were red, like an albino rabbits eyes, freaked the hell out of any one who saw them, my GP had never heard of Wegners (as it used to be called) and was running out of tests to do, when I was in hospital, i had a visit from many doctors, and medical students who were interested to learn about it, I told my Wegs story many times, and still do, the more everyone knows the better.

All the best Rob, unlucky to get this Wegs speedbump, lucky to drive out the other side with all your wheels on.

Regards Woz....

Hey Rob, welcome to the best forum in town.

From another Aussie, you are doing great, and as others have said, things do get better, as you have found with your hearing.
My hearing also came good after high doses of pred, and my eyes, just as Woz's were, were bright red.

If you are on facebook, we have an Oz and NZ Wegener's/Vasculitis group, and also we have a Vasculitis symposium in Brisbane on the 24th August.

Better health to you in the weeks and months ahead, and …….

Quote:

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Originally Posted by woz

It was my ophthalmologist, who got onto it first, and got a blood test to check my ANCA, only a day before my rheumatologist told me she thought she new what it was and scheduled the same test as the ophthalmologist, my eyes were the telling factor he said, they were red, like an albino rabbits eyes, freaked the hell out of any one who saw them, my GP had never heard of Wegners (as it used to be called) and was running out of tests to do, when I was in hospital, i had a visit from many doctors, and medical students who were interested to learn about it, I told my Wegs story many times, and still do, the more everyone knows the better.

All the best Rob, unlucky to get this Wegs speedbump, lucky to drive out the other side with all your wheels on.

Regards Woz....

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I remember being exhibit A in a large university teachng hospital for many medical students and interns. I also gave many spiels and encouragement to be aware of our symptoms.

Quote:

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Originally Posted by drz

I remember being exhibit A in a large university teachng hospital for many medical students and interns. I also gave many spiels and encouragement to be aware of our symptoms.

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Good for you drz. What an opportunity to educate new doctors. I wish they could all hear your spiel and encouragement.

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I was diagnosed in Australia when I was a teenager. It took about 3-4 months. It initially manifested with a swollen eye lid. I went to a GP & they told me o should not be so concerned about my looks. [emoji15] I was really embarrassed so I waited several weeks to again seek out medical help. But all in all it went quickly.
I’m pleased you were also diagnosed fairly quickly. I think it’s a shock for awhile & then you find a new normal.
Natty


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Sorry for the belated welcome Rob. I think you first posted around 5 days before my kidney transplant, so probably had my head elsewhere.
Got to echo what others have said - your fairly early diagnosis prevented things getting much worse, very quickly.

Just want to say hi and welcome to you. Your story sounds so much like mine. I am a 61 year old and had never had anything more than a cold every 10 to 15 years. My family use to tease me that I NEVER got sick! Then in September of last year it hit.
I am so happy that you had doctors who knew what to look for.
May your days get better. Just remember to rest when your body needs it.