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witho
05-20-2008, 04:36 AM
Hi

I'm Suzie Withers, age 36, originally from London (UK), currently living in Southampton (UK).

In March 2007, after feeling unwell for a couple of weeks with flu-like symptoms and after failing to respond to antibiotics (from a suspected kidney infection), a blood test revealed that I had acute renal failure and I was admitted to hospital. Further tests and a kidney biopsy confirmed that I had WG.

During my stay in hospital, I was treated with cyclophosphamide and prednisolone, was dialysed twice and had ten sessions of plasmapheresis. I was hospitalised for 2.5 weeks.

I remained on cyclophosphamide for 3 months, and then switched to azathioprine, which I am still on today and will remain on until September (i.e. 18 months post diagnosis). I am on a maintenance dose of pred (12.5mg every other day). Whilst my creatinine is higher than normal, my kidneys are functioning well and my consultant is very pleased with my progress.

I consider myself lucky that only my kidneys were affected, and that I was diagnosed very quickly - I just happened to be admitted to a renal unit under the care of a vasculitis expert!

Over a year on, and I am living a normal life - working full time, swimming and running regularly (in an attempt to get back my pre-pred shape!) and still waiting for my very long hair to grow back (it's currently about 5" long - thanks, cyclophosphamide!)

Looking forward to connecting with other "Weggies"!

Suzie

Gwenllian
05-20-2008, 05:10 AM
:)Hi Suzie. Welcome!

I'm Gwen, 27 years old, a mum of 2, from Cardiff. When I first had Wegeners it was like having flu too, and when my GP came to do a home visit about a week later, I realised I hadn't had a pee for 4 days! :eek: So yes, my kidneys were affected and my lungs - but luckily, I recovered quite well from that episode. More lately, I've had tracheal stenosis, and I started to lose my vision last year, and i'm pleased to say i'm much better now and off all meds (because I chose to be, not because my doctors said so). Fingers crossed!

Have you been offered Ritixumab (Mabthera)?x

andrew
05-20-2008, 05:37 AM
Hi Suzie!!
Great to have you on board :)

Cyclophosphamide and Prednisone are wonderful drugs but the side-effects are a pain. I lost most of the hair on my head - a fact which came to light even more when I had a haircut a few days after getting out of hospital!!

Good luck with getting in shape. I'm doing the same thing. I have a l-o-n-g way to go but I'm heading in the right direction.

Are there any plans to reduce your pred dosage?

Ditto too on the Creatinine. My doc has told me that's my new normal (around 140) and otherwise the kidneys are firing off just fine.

Thanks for signing up and I look forward to seeing you around here again soon!

witho
05-21-2008, 03:57 PM
Thanks, Gwenllian and Andrew

Gwenllian - I have not been offered Ritixumab. I think they're quite happy with the meds I'm on at the moment.

Andrew - as far as I know, they'll be keeping the meds as they are until September, then hopefully I can start to come off them! We'll see... Incidentally, my creatinine also hovers around 130-140! When I was in hospital, it went up to about 800 at its peak!!

What was a bit strange (I thought) was that despite the renal failure, I was still peeing. Okay, so it was a funny colour ;), but still!

andrew
05-21-2008, 04:20 PM
Andrew - as far as I know, they'll be keeping the meds as they are until September, then hopefully I can start to come off them! We'll see... Incidentally, my creatinine also hovers around 130-140! When I was in hospital, it went up to about 800 at its peak!!

What was a bit strange (I thought) was that despite the renal failure, I was still peeing. Okay, so it was a funny colour ;), but still!

You beat me. Mine 'only' got to 600 :D Apparently I stopped peeing altogether. The docs had me in a coma for the first 10 days of my stay and when I came out of it I had started again so I have to rely on witness statements :)

Kidneys are funny things (funny weird that is, not funny ha-ha). You still being able to pass (some form of) wee even though you had kidney failure is one of the reasons kidney issues are so darn hard to pick up. You could have about 50% kidney function and still be peeing like a horse.

Twice
05-24-2008, 11:57 PM
Hi Suzie,

Your kidneys work in more than one way. Sometimes when you lose kidney function the body's reaction is to make you drink more and pee more because it recognises that there are a lot of toxins in the blood and decides it needs to work much harder. Sometimes, you continue to pee without it doing any good at all. That's called residual function. You eventually dry up, though. My natal kidneys are now about the size of walnuts and aren't even worth digging out.

Good luck coming off the meds. Don't hurry it. Do you go to Friday morning clinics?

witho
05-25-2008, 12:30 AM
Hi again Sarah

My clinics are on Tuesday afternoon at Royal South Hants in Southampton (Dr Juan Mason, or whichever of his minions he brings with him!)