I know it takes some peops a long time to acheive remission, but I'm not sure what's counted as remission. I started treatment in December 2014 (having had a wedge resection of my lung in November 2013), firstly prednisolone and some six weeks after IV cyclophosphamide. My main symptoms were pulmonary, breathlessness, nodules and some bigger lesions, two were needle biopsied and one was removed by wedge resection. I also had frequent haemoptysis. I did have a very sore nose, mouth ulcers and earache and sore feet with numbness at times. I didn't necessarily connect all those as I was frequently told they didn't know what was wrong with me. The biopsy of my lung showed granulomatosis tissue and necrotic tissue. In the words of one guy from the local vasculitis team, bits of it looked like Wegener's and bits of it didn't! However I can see from a presentation that someone posted recently this is a common finding in Wegener's, so maybe he should have known that!

I finished the 6th dose of cyclo in early June. I managed to get down to 10mgs of pred. I see the team this coming week, however, since early July I have been having more haemoptysis, headaches and just generally feeling not so good. My nose is always runny. I don't feel nearly so ill as I did before I started treatment, so that's positive. I was told by a Dr to increase the pred to 20mgs, I telephoned him about my increasing haemoptysis.

The team I am under now are great but their specialism is pulmonary. The reason you have to wait apparently is so that they can assess how treatment has worked. I haven't seen anybody since my last cyclo. The only investigation I have booked is a lung function test after I see the Dr!

I really want to get off steroids because I have osteoporosis and I can't have Reclast because my Vit D levels are too low, apparently it won't work if this is the case. I am on Vit D but I have a parathyroid adenoma and my calcium levels are on the high side. The endocrinologist I see said it would have to be removed if they can't treat me because of it. The adenoma also contributes to my osteoporosis. The surgeons don't want to remove the adenoma because of my Wegener's. I can't bring myself to increase my pred to 20mgs again so I mostly take 12.5mgs or at a push 15mgs.

I am hoping someone can tell me what to expect and what I should ask them. A lot of the time I coast along quite happily in denial and tend to push myself physically probably because of this. On cyclo days I would come home and take the dog out for a walk!

Lastly, could I be considered in remission if I am still coughing up fresh blood? I would be grateful for any advice.

Bloom