Hello everyone, I haven't posted on here before, despite registering some time ago. I have had lots of investigations over the last 18 months, the first diagnosis was thyroid and lung cancer, then after wedge resection of a mass in my lung, I was told I might have vasculitis because I had a positive ANCA and the lesion looked like an inflammatory process, the surgeon said Wegener's but no one else did, I was seeing a chest physician and then referred to the vasculitis team.
The vasculitis team said my blood tests were negative and they didn't want to start treatment until there was something more positive because the treatment was too drastic.
I had two needle biopsies of lung masses and evidence of lots of new things on my lungs on CT scans and almost always had haemoptysis, runny sore nose, earache , fatigue and also was said to have pneumonia on one occasion.
In desperation I saw a specialist privately who reviewed the scans, biopsies and blood tests and said I had Churg Strauss probably because of my long term asthma. He started treatment, prednisolone, the same day I saw him.
I started IV Cytoxan over a week ago and didn't feel too bad straight away, but it seems to be making the peripheral neuropathy, which started at the end of last year, worse also I feel a bit more fatigued, unsteady and have slight difficulties with co-ordination. The Dr is great and this is not a criticism/complaint about my current treatment. At my last appointment the Dr said sometimes you don't fit neatly into one category of vasculitis and there is a spectrum and that I am more likely at the Wegener's end.
I would really appreciate others' experiences of IV cytoxan and whether this is just something I should expect!
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