New Member from Australia!

[Darwin19910]

Hey All!

23 Years old I am from Darwin, Northern Territory, AUS and was diagnosed with WG in August 2014. Initially went into hospital with suspected pneumonia that wasn't responding to regular antibiotics. After a nasal and lung biopsy they discovered I have WG! Which was a surprise to me, as I had never even heard of it (not that I'm a medical professional to say the least haha)!

Anyway I had had nasal issues for the past couple of years before that with constant nose bleeds, sinus pain/blockage and swelling which I later found was to do with WG. I was initially started on infusions of cyclophosphamide and was taking prednisolone as well as all the many other wonderful pills that come with the condition... Six months down the track and they have switched me over to methotrexate and have recently put me on to dexamethasone (which I have been experiencing a few side-effects with, more so than the pred and cyclo anyway).

Have had plenty of ups and downs and struggled trying to come to terms with things I can and can't do anymore due to the medication and recovery periods. I found it quite hard not being able to be as active with sports and exercise as I used to be. But with great support from family and friends it definitely helped me through some of my more miserable days!

Look forward to chatting with everyone and having questions answered and hopefully helping answer some of them myself!

[Dirty Don]

Welcome Darwin...glad you found this site. Great place to learn, share, vent when you have to, and just generally being kind to yourself as there's a lot to learn about this disease. There are many Aussies on this site who will respond at some point with further info. Looks like you have a handle on the WG protocols so far. I had a lot of the symptoms you have including lung damage. You can get to remission as long as you follow protocols and don't go looking for 'cures' and fancy schmancy ways to knock this disease as even the docs/scientists aren't getting a hold of it yet... Best to you!

[kaysee]

Welcome Darwin, Glad you found this site but sorry you had to go looking for it due to WG. This is a great group of people, always willing to listen and to answer questions based on their experience. Every one of us has similar yet very different experiences with this disease. Sounds like you have docs who know this disease - that it not always the case with some of us. Wish you the best in this journey.

[annekat]

Big welcome, Darwin! Having found this forum is a great thing, and I'm glad you are here. Your case sounds very similar to mine, a couple years of sinus/nasal stuff, and then it finally going into my lungs and looking like pneumonia, and being severe enough to get me dx'ed with WG. Same meds, too, CTX eventually switched to MTX. After now almost 4 years, I'm still on the meds but am doing very well, might even be considered in a medicated remission, though no one has said that. There are still residual symptoms due to permanent tissue damage. It doesn't take everyone this long to get to this stage, and you may not have as much damage as I have, mainly to the sinuses and ears, with some mild to moderate scarring in the lungs. You are a lot younger, I'm 62. And it sounds like you are getting good treatment, so there's a lot of hope you will recover from the worst of it and feel almost normal in a much shorter time! There's a good chance you'll be able to be active in sports again. I understand the ups and downs, but there is light at the end of the tunnel! BTW, there are quite a few Aussies on the forum, as you may soon discover. Keep us posted!

[Pete]

Hi Darwin,

Welcome to the forum. I hope the disease hasn't done too much damage. Sounds like you're on a good treatment plan. The best advice I've gotten about our dumb disease is to take the meds as directed and live your life as fully as possible. I'm four years in. I've had one major flare (about 3 years ago). I'm now in a medically induced remission and doing everything I did before I got wegs.

Good luck and better health!

[vdub]

Welcome! Dex is pretty powerful stuff... I was on it for a couple months when initially dx'ed and was then switched to pred. Good luck and come here if you have questions. All but a couple on this forum have personal, direct experience with many of the issues you'll be going through. Below is a link for comparison of steroids and where dex stands in relation to some of the others....
Corticosteroids conversion calculator (hydrocortisone, dexamethasone, prednisone, methylprednisolone, betamethasone (http://www.globalrph.com/corticocalc.htm)

[annekat]

Welcome! Dex is pretty powerful stuff... I was on it for a couple months when initially dx'ed and was then switched to pred. Good luck and come here if you have questions. All but a couple on this forum have personal, direct experience with many of the issues you'll be going through. Below is a link for comparison of steroids and where dex stands in relation to some of the others....
Corticosteroids conversion calculator (hydrocortisone, dexamethasone, prednisone, methylprednisolone, betamethasone (http://www.globalrph.com/corticocalc.htm) Darwin, when I said "same meds", I didn't mean Dex, as hadn't noticed it in your post. Just pred for me, so far, for steroids. Good link here, vdub; I didn't know there were so many kinds.

[mishb]

Hi Darwin and welcome,

You are our first member from the Northern Territory. We don't even have any NT members in our facebook group.

We were deciding that Darwin would be a great place to live because there is obviously no WG up there - well, we have just been proved wrong.
I'm sorry that you have been diagnosed with WG but I am glad you have found this forum. There are some awesome people on here - all of them :biggrin1:

[vdub]

I didn't know there were so many kinds.
After my brain surgery, the surgeon put me on dex until they could determine how much of the pit was damaged. Turned out it was 100% gone. Later, my endo had me go to a class to learn about all the hormones in the endocrine systems, how they interact with each other, symptoms for when they are high or low, and how to react if they are out of range. She is the one who pointed me to the differences of strength among steroids. The drugs we take are amazing things. I doubt any of us would be alive without the steroids. Interesting article on them here:
Corticosteroid - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Corticosteroid)

Sorry, Darwin.... This is your thread. Apologize for the slight high-jack....

[Darwin19910]

After my brain surgery, the surgeon put me on dex until they could determine how much of the pit was damaged. Turned out it was 100% gone. Later, my endo had me go to a class to learn about all the hormones in the endocrine systems, how they interact with each other, symptoms for when they are high or low, and how to react if they are out of range. She is the one who pointed me to the differences of strength among steroids. The drugs we take are amazing things. I doubt any of us would be alive without the steroids. Interesting article on them here:
Corticosteroid - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Corticosteroid)

Sorry, Darwin.... This is your thread. Apologize for the slight high-jack....

Hey Guys!

Thanks for all the warm welcomes! Its no issue talking about stuff on threads! It's all helpful info in my opinion!

I was originally living in Melbourne when I was diagnosed (probably a good thing as the medical system down there is fantastic!) But moved to Darwin to be with family and so far the doctors here have done a really great job with helping me through everything! I have to go in for throat surgery tomorrow due to some swelling in my larynx (apparently it is not uncommon with WG?) So they can dialate and do a biopsy. Otherwise my bloods and scans are looking great and they think that I am recovering really well which is great news!

Will slowly have to to start dropping the pred and dex a bit and see how that goes, maybe a bit slower this time, and then if all goes well, back to living life as normal!

[Mas78]

Hello and welcome to the group.
14 years ago when I was 22 when i was told i had WG. I was also on cytoxan (pill form ) for about two years . Since then i have been in remission. Hope that you can have the same results that i have.
Last fall I posted my fairly long story in the stories section, perhaps something in there may sound familiar and help with your journey. I would post a link for you but I'm on my phone.

[Darwin19910]

Cheers Mas78!

I went back and had a read of your story! Good news to see that you went so long without a relapse. My initial symptoms didn't seem to be as severe, but that just may have been me trying to push through (I was quite active, training with sports at least 5 days a week) but when it did hit I was in hospital in a pretty serious way for about a solid month... I think the docs managed to catch mine relatively earlier which was really good because there was no damage to the kidneys!

I have had bloods done for the last couple months and my C-ANCA levels have been excellent, and everything seems to be going fine. Just got out of surgery for what they might think is a slight flare/localisation in my throat but im already feeling heaps better than going in!

So with any luck ill keep going into remission and be on the path back to normal and get back into my fitness/travelling!

[mishb]

I'm glad to hear that the surgery went well

Fingers crossed that remission isn't very far away

[lag713]

Welcome to the forum! I'm happy to see that you're doing everything you can to get back to doing what is important to you (fitness and travel). I hope that your surgical recovery goes smoothly.