Hi All,

I'm so glad ive found this website, and people that know what wg is without me having to explain!!

I have just been diagnosed with wg after suffering with sinusitis and ear problems since may, its been a bit of a nightmare to be honest but im sure all of you have had similiar experiences!

Im 27 female and i live in the uk with my husband and my 2 children who are 2 and 4.

I have currently been on pred 60mg for about 4 weeks now and i feel 'normal' no pain, fuzzyness or runny nose! its amazing!! and on wednesday i have started mtx taken weekly, 10mg increasing to 20mg over 6 weeks and my steriods are reducing 10mg per month from now on.

Not really sure where to start with all my questions really.....

Firstly i appreciate that i may be in denial and the fact the steriods are making me feel so great after feeling so ill for the past 6 months, but im finding it hard to beleive that i really have this horrid disease. My kidneys and lungs appear unaffected and i have had a chest xray and all looks fine. But i have had no biopsy which i keep reading about, is this something all of you guys have had? they have diagnosed me on the fact that i have high ANCA levels and that i am responding to treatment well, after 1 week of pred my bloods showed no sign of inflamation apparently.

Also im really concerned about being over medicated for a condition that is milder than usual, the side effects of the medication scare me, and the fact that im probably looking at a lifetime of problems due to the medication not the actual disease seems a little hard to get my head around. As it hasn't effected my kidneys and my lungs is it likely too in the future? i have always suffered from mouth ulcers, nose ulcers and fluid in my ears so i feel it is something that i may of been living with for a long time, until the major flare with my ears in may.

Im a naturaly curious person and id really like to find a specialist (anywhere in the world! the american research seems a lot more indepth than the uk) that really understands this disease and maybe find out a little more about how it will effect me and the treatment i should be taking. Im currently under a rhemetologist that has treated other wg suffers before but with much more advanced disease. She has said that i will not be looking at coming of the mtx for at least 5 years, and she aims to keep me on it for 10! this seems so long, is this normal? Do you know of anywhere i should be looking to find a specialist?

Also for you guys living on mtx all the time, do you feel well, or do you class yourself as an ill person on treatment? i have got to accept that i will always have this condition, but im struggling to find answers to whether i will always feel different, or i can carry on with my life hardly noticing it! im nervous about the steriod weaning as im sure i wont feel this well without them, i was on steriods for facial palsy in the summer and once the dose reduced i plumetted back to square one, but the course only lasted 3 weeks then.

I understand what i am asking is how long is a peice of string and everyone is different, i'd just really like to hear how you all get on day to day with this and what changes have happened to you due to this.

I hope i dont appear rude in asking so many questions, its just one minute i feel fine and then i remember that i have this condition, that is likely to seriously reduce my life expectancy and i find that so hard to understand!!

Any input will be greatly received and i hope to get to know you all better soon

thanks

Jo