Hello from New Zealand

[mzschaumkell]

Hi everyone, my name is Jo. My partner was diagnosed 2 weeks ago with Wegener's, after a month with an ear and chest infection. These two infections subsided, however his eyes turned bright red and his joints started hurting so much that he couldn't walk. He lost about 15kgs. He was admitted to hospital where they advised that he had something "strange" in his lungs and his creatinine level was 1.84.

The hospital was wonderful and in 3 days we had a diagnosis, biopsy done and he was on his medication routine.

I have been reading the forum and it has been very helpful. It is all a bit scary and to think a month ago he was climbing up 100 flights of stairs daily!! To now sitting on the couch not being able to do much at all.

It appears the medicines are working well and at the moment apart from the fatigue there are no adverse side effects.

Is there anyone else here from New Zealand?? I have seen a few Aussies on here!!

[annekat]

Welcome, Jo. Nope, not from NZ or down under, but I'm glad you have found us. I don't know what I would do without this forum.

If it's only been two weeks, it is absolutely normal for your partner to be able to do nothing but sit on the couch. For me, it took several weeks to get beyond that point, and then it has been a slow improvement for the last couple of years to where I now feel almost back to normal, while still having some residual symptoms and still on maintenance meds. It may not take that long for everyone, and for others it may take longer.

I'm glad you feel the meds are working and that side effects are minimal. What meds is he on? Please keep us posted on his progress and feel free to ask any questions. Sorry I can't help you with the creatinine, as I have no kidney involvement and don't know much about the numbers or what changes they can go through, even though I am tested for that regularly.

There is a link at top of page to a worldwide Weggie Forum members map. If there is anyone from NZ and they have added their name to the map, you will see them. If they haven't, your partner can be the first!

[mzschaumkell]

Thanks for the reply Anne.

He is slowly getting better day by day. He has no pain, cough or other symptoms he had before hospital, apart from a hoarse voice!! Which the doctors say is from the Pred.

He is on 60mg of Prednisone (which is going to be dropped to 40mg on 1 August) 200mg of Cyclophosmophide and an antibiotic.

Oh there is one person from NZ! I didn't think there would be many of us.

The doctors did diagnose him fast, but i am unsure if they have had an experience or other patients with the disease, we don't have the benefit of going to specialists in the disease, being such a small country. So I guess we just have to put our trust in them and ask heaps of questions!!!

[annekat]

He is on the same regimen of meds that I started on, except my cyclophosphamide dose was smaller, undoubtedly because I weigh less and they do it by body weight. If his symptoms have abated that fast, he sounds exceptional. It is great that he got a quick dx, as many of us had "smoldering Wegs" for a couple years or more before we were dx'ed. And Washington state is like NZ in that there are no true WG or vasculitis specialists here or nearby. There may be some competent docs at the University med school or elsewhere, but we have to sort of take what we can get or take special pains to travel to or consult with a true specialist. It sounds like your partner is getting pretty good care whether they are specialists or not. Perhaps the hoarse voice is from the pred, but in my experience, it could be from other things such as mucus dripping down into his larynx and bronchial tubes and causing irritation there. Many of us have an annoying dry, sometimes productive cough from this. But everyone's symptoms and involvements are a little different. In any case, the CTX (cyclophosphamide, Cytoxan) worked wonders for me over the year or so that I took it. Hopefully, he won't need to take it that long, as just a few months of it is preferable due to the risk of bladder problems and bladder cancer. Make sure he drinks LOTS of water to minimize that risk. I haven't heard of anyone on here having that happen, but I've only been on here a couple years, and I think the risk is real. After awhile on CTX, he may be switched to a milder, less toxic drug such as methotrexate or azathioprine (Imuran). Lots of terminology to soak up around here!

[Alysia]

Hi Jo.
welcome to the forum. your partner was lucky to get dx so quickly. and he is lucky to have you, searching info for him and caring.

Anne, you explanations are wonderfull. I wish i had them when i was dx....

[annekat]

Hi Jo.
welcome to the forum. your partner was lucky to get dx so quickly. and he is lucky to have you, searching info for him and caring.

Anne, you explanations are wonderfull. I wish i had them when i was dx.... Thanks, Alysia. I am actually a relative newbie compared to some people here. Everything I know about Wegs and the meds I have learned from this forum. I was lucky to discover it just a little before I was dx'ed, when I already suspected I had it. I had even heard of Wegs before that from doing research on ear problems on the web. So once I knew I had it, everything sort of fell into place.

[Dirty Don]

We call her 'Dr. Annekat'!!! LOL!

[annekat]

We call her 'Dr. Annekat'!!! LOL! OMG, Don. LOL. I am far from it! I KNOW there are people on here who know WAY more than I do! I am just compulsive sometimes about sharing what I THINK I know, and maybe it is a way of clarifying it for myself at the same time.

[mishb]

Hi Jo and welcome to this crazy lot.........and I don't just mean the WG :flapper:

As Anne said, your partner was very lucky to be diagnosed so quickly and thereby avoiding any extra stress that it may have put on his system.

I see you have put up some other posts so I better read them before I ask any questions that you may have answered elsewhere.

Take care

[Mikek]

Hi Jo, in February my wife, Jenny and I enjoyed a cruise tour of your beautiful country. We so enjoyed the friendliness and scenery. Now, just a few weeks later, she hasn't enough energy to swear at me! I can defiantly see improvement happening from the Pred/MTX and have found this site to be so helpful with the fast earning curve. I hope that you find the same. Anyway greetings from across the ditch and the best of prognosis to you and yours. From Tasmania.

[mzschaumkell]

Hi Mike, nice to meet you. We do have a beautiful country, however you wouldn't know it today with 130km gales and rain!!!! Nice day to stay inside I think....

I have learnt so much, and thankfully right now my partner is responding really well....but as you know this crazy disease can rear it's head at anytime, so one day at a time for us!!

We were meant to be in Australia on Tuesday for State of Origin, however put it on hold for the moment, as probably isnt the best idea to be in a stadium with 85,000 people at this stage!! :) Hopefully next year.....

[MCC]

sent you a message :)

[Mikek]

Hi Mike, nice to meet you. We do have a beautiful country, however you wouldn't know it today with 130km gales and rain!!!! Nice day to stay inside I think....

I have learnt so much, and thankfully right now my partner is responding really well....but as you know this crazy disease can rear it's head at anytime, so one day at a time for us!!

We were meant to be in Australia on Tuesday for State of Origin, however put it on hold for the moment, as probably isnt the best idea to be in a stadium with 85,000 people at this stage!! :) Hopefully next year..... maybe next year, we can but hope. We're retired and usually go to London or Paris to avoid winter in Tasmania. No crowded airports this year. Home with the heating on. Could be worse.

[Geoff]

Hi Jo, congratulations on getting a quick DX for your partner, hopefully the docs will get on top of things early and keep the Wegs at bay. This forum is a huge source of info but dont forget that nearly everyone has different syptoms and "hot points". Get your partner to keep a syptom diary along with the meds he is taking as this will be of great use to the medical team.
I was DX over 5 years ago and did get back to work full time but now at 62 and climbing! I feel the desire to step back from the work place! Last October we visited Rarotonga and then onto Auckland to visit rellies, perhaps next time we will pop in?? we have cousins in Waikenai(Sp??) not far from you! Good luck and try and keep a positive outlook!

[mzschaumkell]

Hi Geoff, Thanks, doctors are very impressive so far....

We are just taking it day by day, trying to be positive. He is only 34, so hoping to work for a while yet, (well I am sure he would wish to be hunting and diving than working!) Yes, your relies are only about 30 minutes away in Waikanae, thats beautiful, nice beaches and good fishing!!

[Geoff]

Walking on Waikanae beach with our cousin's dogs, watching them swim out into the sea in a vain attempt to catch the seagulls....Priceless!! :biggrin1:

We have been very fortunate to visit your beautiful country 3 times, and always stopped on North Island, the big dream is to head down south and see for ourselves what all the fuss is about!