New Member from Brisbane, Australia

[Sheena]

Hi Everyone

I have just joined up to this forum and I am excited to chat to you all.

I was diagnosed with Wegeners 3 years ago. It started out with flu symptoms, a cough I couldn't get rid off, blocked sinuses, a red left eye, joint pains that moved around my body, a rash, and feet so sore that I could barely walk on them. I went into Hospital for a week but they couldn't figure out what was wrong and sent me home on a small dose of Prednisone. A few weeks later I had an appointment with an ENT surgeon who recognised the symptoms as Wegeners and sent me for an ANCA blood test. That weekend everything got suddenly worse when I started coughing up blood and having difficulty breathing. I was rushed into hospital and they already had the test results that confirmed Wegeners. That night I started Chemotherapy!!!!

At 26 years old you don't really expect your body to fail you. I was in hospital for 4 weeks, the first 3 barely able to get out of bed. I had to leave my job and concentrate on getting better. I remember when I came home from hospital that having a shower was the biggest part of my day, it was just so exhausting!!!

I had 3 months of chemo with high doses of prednisone. I put on 16kg in just over a month and my face was huge. To be honest I think the physical changes from the prednisone was and still is one of the hardest things to deal with.

After the 3 months I moved to methotrexate and started bringing down the prednisone dose.

I have now moved to Imuran 150mg and 5mg prednisone. I recently experimented with a drug called Arava but that didn't do anything different and the long term side effects were not worth staying on it, so as of last week I am back on Imuran.

I really hope that a day comes when I can come off these drugs but at the moment my results seem to be stuck at a certain point and are not pushing past that. I struggle a lot with tiredness, but I do try to just push through it.

I am now back in full time work and loving it! I had amazing friends and family that have really helped me and been there for me over the last 3 years, but I must admit that I am excited to talk to people that have wegeners as I haven't met or spoken to anyone that has wegeners and really understands what it is like and what I have been through and what I am going through

Look forward to hearing from you all and sharing our stories

Sheena

[Jack]

Hi Sheena and welcome to the site. As you say, this is one of the few places where most people will understand the way you feel. Everyone's case is very different, but whatever it is you have on your mind, someone here is sure to recognise similarities.
Looking forward to seeing your posts.

[elephant]

Welcome Sheena, you were lucky to have a ENT that was on the ball. I understand about pushing through the tiredness. I use to work full time but now I stay home with the kids, so I am able to take a nap. I feel so much better after a nap.

[Sangye]

Hi Sheena, welcome to the group. I'm glad you're able to work again. Feel free to post questions, suggestions or vent--whatever you need. This is a great group. We share fears, tears, laughs and even our angry red pred faces. LOL

[manalolana]

Welcome Sheena! I just recently joined as well. It's been just so comforting to know that I am not the only one. As Sangye stated, this is a great place to share and be understood.

[flana]

Welcome Sheena! Hope you will do well for the rest of your long life...

[Hammy8241]

Hi Sheena, thought i'd already welcomed you but it seems not. Maybe i'm haveing a pred moment. No judgments here, only well meant banter and advice so do join in and try to keep yourself sane.
lalalalalalalalalalalalalalalalalal!!!

[Jack]

Hammy!

Please try to keep up an image of decorum in front of the colonials!

[Sangye]

ROTFL

[dunkie2202]

Welcome Sheena, you will gain alot of good advice and better understanding of WG from here.