Hi Jenny, I'm from Mission, BC. I've had WG since Nov 2006, been on cyclo from dec 2007 to June 08 and now back in the dumps - lung lesions, blood in urine, tinitis (permanent ringing in my left ear), lowered hearing, sinuses, both feet parasthesis (can't feel them) - have I left out anything?, oh yes cramps in legs and hand and my eyes hurt. I keep lowering and upping pred depending on how I feel.
Doc's don't do much - I guess so little is known that each specialist is waiting for another to have me go back on cyclo. I'm not complaining I seem to be lucky and I feel good despite all. I just wish to keep it at the level it is at and not have any permanent damage. My ANCA is back above 200 and CRP and ESR well above normal.
Debbie don't ignore the ears, I believed my family doc that it was just an ear infection at the beginning and took to long to go on pred. Now I don't think I will always hear the ringing in my left ear.
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Hugs,
Jolanta