wegeners granuolomatosis any words of encouragement??!!

hi all

diagnosed in early july and i believe very early with this disease which i had never heard of it before! it manifested itself as an ear problem in mid may and was initially treated by my GP's as an infection but after 3 seperate prescriptions of antibiotics there was no improvement and so in june i was referred privately to an ENT consultant. More and stronger anti boitics prescribed - another failure so within a week i had a CT scan which resulted in a Mastoid operation on my left ear to clear an infection - I also had a grommet inserted. The operation cleared my pain but i remained almost totally deaf in my left ear and still do. The ENT guy had sent material from my ear and bloods to the path lab - the result was that the bloods showed high ANCA levels and so i was referred quickly to a Rhuematologist who confirmed WG and i was immediatley prescribed steriods (prepnisolene) initially at 60mg per day but reducing by 5mg per 14 days so currently at 35mg.. on 26/7/11 i started a 6 month course (1 session per month) of chemo (cycloproshamide) and to date have had 3 sessions. I am told that i should regain my hearing in time and that the disease should be put into remission and be held there by further medication.

To date though i have felt no benefit from the steriods or the chemo and my hearing seems to be deteriorating. I am permanently fatigued and totally without energy although i am suffering no other side effects from the chemo. Looking at other \"posts\" it is clear that i am fortunate in being diagnosed early and that the disease had not spread to other organs for i read of a lot people who seem to be in far worse condition than me. Possibly because i was diagnosed early i maybe iexpect early improvements - am i being impatient? anyody out there with any words of advice, encouragement or with a similar experience that they can share. Also anyone with a similar hearing problem and was their hearing recovered - my excursions into this site anmd others in the USA don't exactly give positive feedback with regard to this!

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