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I was prescribed an oral suspension while I was on Cytoxan, to prevent ulcers. It was Nystan (or Nystatin) and I had to take it several times a day after meals. I got a couple of ulcers, but this...

Hi Lucy and welcome

Sorry to hear that your mother was diagnosed with WG, but it sounds like she's finally getting the right treatment. As Andrew says, most of us Weggies have chemo and steroids,...

I am aware on public transport when people around me are coughing and spluttering, and try to avoid being close to babies and young children (who are very good at carrying germs around). Luckily, I'm...

Oh yeah - the other big side effect from cyclo is that my period stopped for 6 months. Actually thought I was in the menopause for a bit, because I was getting hot flushes. But my period came back...

Hi Richard - welcome to Weggie world! Sounds like you've got the right attitude, I hope you continue to improve.

I too lost weight at first, through not being able to eat when my kidney failure...

Hi Debbie

I was on cyclo in tablet form, 150mg per day, for 3 months after diagnosis. Then since then, I've been on 150mg Imuran.

My hair thinned out to the extent that I had it all taken off...

I felt lethargic and lacking in energy at first, and my urine was dark. At the time, I didn't realise that I was passing blood and protein - my doctor said it was probably dehydration, but I knew I...

Yes, I think the weight gain has lessened. I'm hoping that by keeping up the running and swimming, I can start to lose weight again in earnest. It does seem to be very slow progress though.
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Gwenllian - you are so right when you say "my friend, my enemy"! An amazingly powerful drug, but boy, does it mess with you!

It was great to get an appetite back (I hardly ate for a couple of...

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!)

Hi Sarah - I also live on the South Coast - Southampton

My consultant is a Nephrologist (only my kidneys were affected) who is based at Queen Alexandra in Portsmouth, but he also holds clinics in...

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...

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...