My son Andrew

[margaret McLean]

Hi my name is Margaret McLean My son Andrew has had wegeners disease for 12 years first it was affecting his kidneys then it went into remission and last year his bladder bled till it was a non viable organ the doctors removed his bladder and made him a new one with 50 centimeters of his bowel so after a long and painful process it has begun to work normally except his disease wont go back into remission so he now has poor Kidney function and doctors want to put tubes from each of his kidneys to outside his body for urine to measure what is happening but this could mean he could lose his kidneys and be on dialisis if they bleed so he has refused to have this done He is on Mabthera treatment 3 monthly. I am just a worrried mum and would like to hear from anyone who has similar problems an what they have done about this

[Psyborg]

Welcome to the forum, and sorry that your son is having these issues.

I've not experienced the Kidney aspects of the disease so I'll leave that to the more experienced members. Did the doctors speculate why the bladder was bleeding? That isn't a "normal" Wegeners issue as far as I've heard. He's not taking CTX constantly is he? I know that can cause bladder damage over time? Of course our first question will be are you seeing a Wegeners specialist?

[Sangye]

Hi Margaret, welcome to the group. Your post confused me at first because the guy who runs this forum is named Andrew MacLean.

I'm also wondering if ctx is what damaged his bladder and if he's seeing a Wegs specialist.

[NicShaf]

Hi Margaret, welcome. How many MabThera treatments of the 3 has he gone through so far?

[margaret McLean]

Hi Nicole Andrew having mabthera treatment every 2 months to keep him alive also my husbands brother in England has just been diagnosed with wegeners which is also affecting his kidneys and needs to have a stent put between bladder and kidneys . Andrews bladder died due to beinmg on cyclophosphomine for 6 years to keep wegeners in remission but now having mabthera instead. andrew now having very poor kidney function needs transplant. Margaret

[Jack]

6 years on Cyclophosphamide is criminal! 6 months is the recommended target.

It sounds like your son desperately needs to consult a Wegener's specialist if that is not already the case and it does not sound like it is.

I too have had kidney failure followed by dialysis and a transplant, but this is not an option until the Wegener's is under control.

[Sangye]

6 years on ctx???!!! :predrage: