New from the UK

[Donnak06]

Hello everyone, I live in the UK and was first diagnosed with wegeners 25 years ago. I had the usual treatment steriods, cytoxan and then imuran. I was declared in remission after two years and discharged from the hospital after 5. At that time it was very rare and the doctors had never treat anyone for this condition before. I have been off all medication until recently. I was diagnosed with a flare three weeks ago in my nose and windpipe. I'm on 60mg steriods and start cytoxan iv tomorrow. Last time I was on cytoxan it was oral but the doc said that iv is not as toxic. My question is are the side effects from the iv worse than when you take it in oral form. I'm planning to have the weekend off and return to work full-time on Monday does anyone think this is possible. I work in an office so it is not manual work.

By the way I think this web site is great they never had anything like this when I was first diagnosed and it is very useful for people who have just been newly diagnosed.

[woz]

Hi donnak06, 25 years remission, that's impressive, unlucky to be having a flare , but lucky you have hopefully caught it quick enough, sorry I cant tell you much about the IV, but if you feel good enough, go with it, I have had the usual treatment you had , now in remission on azathiaprine (imuran). All the best, I hope everything goes well.

Regards Woz.....

[Donnak06]

Hi donnak06, 25 years remission, that's impressive, unlucky to be having a flare , but lucky you have hopefully caught it quick enough, sorry I cant tell you much about the IV, but if you feel good enough, go with it, I have had the usual treatment you had , now in remission on azathiaprine (imuran). All the best, I hope everything goes well.

Regards Woz.....

Thanks Woz. I know I'm luck to be have been in remission 25 years but was still feeling a bit sorry myself having a flare.

[Titus3:2]

Hi Donnak06,and welcome to the forum.Sorry that you have ended up here.I prefer the infusions over oral Cytoxan.My treatments lasted about 8 hours each;lunch was included.Good luck.

[Donnak06]

Hi Donnak06,and welcome to the forum.Sorry that you have ended up here.I prefer the infusions over oral Cytoxan.My treatments lasted about 8 hours each;lunch was included.Good luck.

They've told me that my infusion will only take two to three hours, eight hours seems a long time. Were you able to return to work in a couple of days.

[Titus3:2]

My infusions were once a month for six months.I was able to go back to work,not a big deal.I was told not to clean the cat litter boxes,and flush twice after using the restroom.Unfortunately,I still had to clean the litter boxes,LOL. Two to three hours per infusion sounds good to me.I had a twelve year remission,but have had trouble staying in remission since WG returned in 2005.

[Alysia]

welcome Donna :) 25 years in remission is very encouraging to all of us. I am sorry about the relapse and I hope that you will be able to get into remision again soon.
I didnt get ctx so I can't help about it. I got rtx.
nice to know Titus, that you were twelve years in remission as well.
maybe we need to open a new thread: how long have you been/ are you - in remission.....

[annekat]

Welcome, Donna. I'm glad you found us. I'm sorry about your relapse and hope it can be controlled with no problem. It must be pretty disappointing after being in remission that long to have it come back. I'm sure we can all learn from your WG history and I hope you will continue to join in discussions. I'm sending healing thoughts and prayers your way.

[drz]

I believe treatment regimes and general awareness of Wegs has improved greatly in last 25 years but your story reminds us of the need to keep watch as Wegs can resurface again at any time, even after a long remission. Best wishes and hope you regain a state of remission quickly again.

[mishb]

Hi Donna and welcome to the forum - I guess computer usage and the world wide web weren't a big thing back in those days.
I'm glad you have found us now.

I'm so sorry about the flare and hope that it gets under control very quickly and remission is your friend, yet again.