wegeners granuolomatosis any words of encouragement??!!

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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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  • Posted

    It's not about what an individual suffers but what you can suffer and WG can be suffered lots happen with WG you have only started your journey but I hope you don't have to suffer but if it gets out of control you'll cope the meds make all the diff keep on top of your meds that's the secret 

    Take Care



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