New to Site

[MichelleH]

Hi
I live in Brisbane Australia and was diagnosed with Wegener's in October 2010 after a prolonged bout of sinusitis. My ENT specialist ordered a biopsy, WG was diagnosed and I was off to an Immunologist to manage my treatment.
It was all really frightening for me and my husband. When I went searching for a support group here in Australian- "Wally" was the lone 'president of the group as he explained that it had all but folded.
I had little luck in controlling the disease with methotrexate and prednislone so in July 2012 I had 2 treatments with rituximab. After initially having a bad reaction to it, my disease settled down and although I still felt tired , it was the first time in years that I felt well.:smile1:
The positive effects are starting to wear off and it is another 6 months until another round of rituximab. (In Australia it normal only to give rituximab therapy once every 2 years). I have been told to brace myself for the onset of symptoms which they hope to manage with steroids. I have also been told to see a psychologist to help me come to grips with the likely future of cycles of good and bad health I will experience from now on. I have started seeing the psychologist ( the jury is still out whether this is helpful) so I decided that it wouldn't hurt being able to talk to others with the disease.
So here I am- I hope to pop in now and again especially when spirits are low and I need a:hug1:

cheers
Michelle

[Pete]

Welcome to the forum, Michelle!! There are real people on here almost 24/7, so you'll be able to vent, ask questions, get answers, and share experiences. I hope you can get the meds you need when you need them. Rituximab is becoming the gold standard for treating our dumb disease. There is a lot of research underway to find the optimum dosages for disease onset and for controlling relapses (flares). Forum members also post links to research and related articles here, so there's new info here.

Good luck and better health!

[annekat]

Welcome, Michelle! The long bout with sinusitis before diagnosis is pretty common. You will read about many more variations of Wegs symptoms on here, if you haven't already. Of course, you've had it for a few years, so probably know all this. I understand the feeling of low spirits when going through the recovery process, I'm sure we have all been there, and we are here to listen to your feelings whether positive or negative. There are several Aussies in the group, including another Michelle, who I'm sure will fill you in on possibly meeting up with some of them. It helps so much to feel less alone by being on the forum, and even more so, by meeting other Weggies. Also, many on here have been on RTX and can talk to you about that. Please take advantage of searching the archives to see old threads and posts on whatever issues you want to know more about. And please keep checking in here and keep us updated. Here is a big hug from me: :hug2:

[windchime]

Welcome Michelle, There is a wealth of information on this site and people that have experienced just about everything. Thanks for sharing your story. Hopefully you will not have to wait too long to get another RTX treatment. Is the two year rule an insurance thing or what the docs recommend? Keep us posted and feel free to pop in any time. Feel better and here is that hug you need :hug3:

[mishb]

Hi Michelle and welcome.

Yes Anne is correct, there are many Aussies on here.......unfortunately, but if you have WG, then this is the best place to be :thumbsup:

As well as our WG Aussie & NZ Support Group that we have on facebook. If you are on facebook, check us out. We have quite a few members from Brisbane.

I'm not sure about RTX being given every two years only in Australia. I haven't heard of that. I know it has now been approved for WG, where it wasn't before,

If you are on fb, I have attached the site link below.

https://www.facebook.com/groups/516643745050360/

[Alysia]

Hi Michelle,
welcome to our weggie family.
can you please tell us what was the reaction you had with the rtx ? and how did you handle it ?
for me2 mtx & pred were not enough so I am on rtx. the first round was 1000mgX2 and the second, after 6 months, a maintenance one, of 500mgX2.
I think that rtx should be given every 6 month or less. but not more.
good luck and continue to write.

[woz]

Welcome Michelle, Its amazing how much information you can find on this site. The people who answer, and give help to people, when they need it the most, are just fantastic ( thanks guys, and merry Xmas). All the best, I hope your journey goes well.

Regards Woz...( another Aussie,Near Byron bay NSW)

[MichelleH]

Hi Michelle,
welcome to our weggie family.
can you please tell us what was the reaction you had with the rtx ? and how did you handle it ?
for me2 mtx & pred were not enough so I am on rtx. the first round was 1000mgX2 and the second, after 6 months, a maintenance one, of 500mgX2.
I think that rtx should be given every 6 month or less. but not more.
good luck and continue to write.

Hi Alyssa
I had the reaction after the 2nd 1000mg dose I developed fever and arthritic pains which lasted about a week. I spoke to another Immunologist that I see through work and he said that it is uncommon but he has seen a similar reaction in one of his polymyositis patients. At the time I remember thinking "Christ I thought I felt awful before the rituximab but this was gross"
thanks for the well wishes I glad I joined the group.
M