Earlier this year I consulted with a urologist because of frequent UTI"s. Following a cystoscopy he prescribed macrodantin as prophylactic treatment. I was concerned about this as my nephrologist who treated me when first diagnosed refused to put me on this drug. When I returned home that day I googled macrodantin and discovered that it should not be given to people with a GFR below 60...mine was around 50 at that time. I have been battling UTI"s since and trying to prevent them with cranberry tabs with some success. (Note: Macrodantin is not available anymore)

I decided recently to consult with a nephrologist, the main reason being the UTI's but also because of my CKD caused by WG. I have been fortunate (touch wood) that my CKD is stable but should a problem arise it would be a good idea to have an expert on my team who is aware of me.

Last week I had my first consultation with the nephrologist. As the UTI's is my immediate concern I started the interview with them. Soon though WG was mentioned and the UTI' was forgotton. At the doctors instigation I went through all my WG history. He found fault in a lot of the treatment protocols and disagreed with a lot of what had been done. eg. He said that oral cyclophosphamide is the only treatment of choice for WG to get it into remission and that IV should never have even been considered.
He then decided to evaluate my kidney function by ordering a 24 hour urine test and blood work plus an ANCA as I had mentioned that I thought I might be having a mild flare because of the sinus/vertigo/muscle problems I have been having. I actually did not have any complaint about my kidney function as test done a week before showed all was well.

Today I had my follow up appointment. He is very happy with my blood work (apart from cholesterol) and although the blood test showed stage 3 CKD the 24 hour urine test which apparently is more accurate showed stage 2 CKD. He told me my ANCA was negative (no surprise) and that upper respiratory tract symptoms did not mean a WG flare at any time. Wonder what my ENT would say to that?! He then goes on to tell me that my WG is well controlled and to get on with my life...in a manner that made me feel like a hypochondriac! Odd comment since we never did discuss my quality of life.

The main reason for visiting him was because I wanted his expert opinion on my frequent UTI;s What can I do to prevent them/prophylactic antibiotic/diet/.sugar/ HRT/cranberry/Dmannose/anything, any tips which would help prevent an infection damaging my already compromised kidneys as then I would be in big trouble. I never got any tips, only told to send a specimen away for culture the next time it happens.

Have I got this wrong? Is advising patients about this not part of his job. I never even got to chat to him about how this was having a very distressing impact on my life.

Arrogant and dogmatic are words that come to mind. I think to someone not familiar with WG he comes across as well informed but he is not. I know many of you travel many, many miles to consult with doctors at vasculitis cenrters and I am sure it is so worth it.

Now I have had my rant I fell much better. I still need a nephrologist, someone who will at least listen....my search continues. I will think about it next year!