I'm New Here

[shazny]

Hi to everyone I'm Shazny and new to this forum. I started being ill in 1993, had my beautiful daughter in August 1998 - still undiagnosed and was finally diagnosed with Wegeners in February 1999 and started immediately on cyclophosphamide infusions - supposed to be 6 over 12 weeks, was told not to get pregnant whilst undergoing chemo and then that ended up lasting 24 doses over almost one year. By the time it finished i was sterile and unfortunately my relationship broke down. I have been in an out of hospital at least 3/4 times each year with various flare ups of the disease and have tried imuran, cyclo, pred, rituximab and am currently on 2gms of mycophenolate daily and 30mg pred. Since starting the pred 9 years ago i have gained over 100lb in weight and been completely off it only 3 times and have flared up bad enough within a week of stopping the pred that i've been admitted every time. I can usually cope very well except when my back pain starts after various scans and an mri they can find no apparent problems or cause for my back problem but it does render me unable to move, walk at all and i need to use a wheelchair. Despite this i manage to work, try and stay positive for my daughter's sake and just get on with life. I am compared to some people very lucky. I am feeling a bit down today as I have just received a letter to say that i have moderate diskaryosis and therefore am awaiting an appointment to have a colposcopy. All in all i think that that's my lot. i look forward to speaking to you all as and when i can. best regards to everyone.

[Sangye]

Hi Shazny,
Welcome to the group! I'm glad you're here. It's great having people to support you no matter what you're going through, and no matter how you're going through it--calmly, kicking and screaming, angry, sad, hopeful, thankful, whatever. As you know all too well, with Wegs we change moods like socks.

I'm sorry you're have such a hard time getting your Wegs to behave. So much pred-- you must be completely sick of it, and all its side effects. I hope your colposcopy goes well. Take good care.

[Jack]

Hi Shazny,

Sounds like you're having a hard time getting your Wegs to behave itself! Have they put you back on Cyclophosphamide during your flare ups? That used to be the regime when I was having trouble - Cyclophosphamide, then Azothiapine then Mycophenolate with varying amounts of Pred thrown in.

Please feel free to unload yourself on these pages, we all understand. Also, you're not alone with the sterility and marriage problems. I've been there too and know how much strain long term illness puts on partners - perhaps I'll make it the subject of another thread.

[shazny]

Thank you so much for your kind words. No they haven't put me back on the cyclo as she thinks i've had too much of it already i've had it another four possibly five times since the initial course and it doesn't seem to work very well. I think its going to be an absolute last resort now. Been to see my own doctor this morning who has reassured me that whilst embarrassing the colposcopy and subsequent treatment will be "pips" as my daughter calls easy things lol compared to what i've had before with various wegs tests and treatments, so feeling a little more positive today.

[Sangye]

I wish you only pips from here on.

Pips to everyone.

[shazny]

Lol thank you very much!!!

[shazny]

Lol thank you so very much.

[KtheC]

Welcome aboard Shazny. I certainly hope things calm down for you a bit. Us weggies are always having some kind of ill-mannered flare up of some kind or another.
There is always some one here for you to chat with
Above all try to stay positive. This is often the most difficult thing to do.

[coffeelover]

welcome Shazny,

I am glad you found us. Feel free to vent, then vent some more, then as needed vent some more. We all know what you are going through.
Your WEGS sounds like a rollercoaster ride. Lots of ups and downs. The moods go with that. I am glad you have your daughter to keep you focused on other things besides the WEGS. She's going to be a great gal with a strong Mom like you.

Keep on truckin'
Coffeelover Lisa

[shazny]

Thank you so much for your replies. I am in positive mode today. Been to see my specialist and whilst my weight has now gone from originally 63kgs 10 years ago it is now 111kg!!! thanks to the seroids but she has reduced them today from 30mg daily to 20mg for a week then 15mg for a week then down to 10mg providing my bloods remain okay, so at least that should stop some of the weight creeping on. Also she has suggested some anti tnf drugs (not sure which) but says that they are quite risky but we seem to be running out of options but hey at least whilst i'm well i'm staying positive and its my birthday Wednesday so hoping for a good week all round!!! Thanks again for your kind words.