Thanks Michelle, does not seem to be to many Aussies on here, Melbourne hey, how did you go with all that rain and storms recently, wind was bad... "BLOW A DOG OF ITS CHAIN"
Thanks Michelle, does not seem to be to many Aussies on here, Melbourne hey, how did you go with all that rain and storms recently, wind was bad... "BLOW A DOG OF ITS CHAIN"
Thanks Brendan, I love my beer I am a regular elbow bender, but have not been able to stomach any for a while now, thats how my wife knows I really am sick.
Steve
Yes, what a wonderful Christmas day we had, but as I said on another thread .......that's Melbourne for you, four seasons all in one day.
Thankfully the hail stones didn't punish our area...... this time, but working in the Insurance field, we have been hit really hard this year and last with the storms, floods and fires.
Bring on a better, healthier 2012
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
hi im from melbourne. I was dx in august 2011. im also on cyclophosphamide and pred. disease affected my lungs no kidneys issues as yet. Happy New Year
Gidday Steve , good to have another Aussie to chat to. I'm from Sydney & welcome you too.
I've just joined this wonderful club & am so sorry that you have Wegs as well.
I have just had my 2nd. Cyclophosphamide IV chemo-- 5more mths. to go & then fingers crossed .
It had just started up in my kidneys. Lucky I had the biopsy early , got to thank the good doctors at Concord hospital for fitting me in in the middle of the xmas rush.
Hang in there Rita.
Hi Rita, thanks for your contact, I have been looking for some aussies, and I am on the pill form of Cyclophosphamide 100mg and 60 of pred, along with all the other pills to protect our organs from the other nasties, how much function did you loose in your kidneys, do you have it anywhere else will be very interested in following each others progress seeing we have just started, How much Pred u on and are you getting side effects, looking forward to chatting with you, Take care and we will beat this.
Steve
Hi again Steve,
It all started with an ear infection antibotics didn't work so my gp sent me to an ENT. He tried ear drops & a stronger antibiotic but no good.
Then my joints became so painful I could hardly walk or use my hands. My sinus was causing me problems so he sent me to to have them biospied.
By this stage I was looking on the internet because my dad had Wegs & i found out that my symptoms were relevient to Wegs.
It was funny because on the day he rang me to tell me that i had Wegs I had a letter I had written to him to say that i thought that too.
So off I went to hospital .They had to do a kidney biospy because they could't get enough from the sinus one.
I to started off on 60mg pred. now down to 45mg &every week drop 5 mg. Haven't put on weight yet because every time I get hungry I have aglass of water.
My face is a little fatter now but on the bright side it has filled in some wrinkles. Am also on a very strong Bactrim-- sulfamethoxazole 400mg +trimethoprim 80mg.
I have trouble sleeping maybe its the pred.
The Wegs had just started in my kidneys ,not sure of the % but doctors tell me it is very low. My father didn't have the drugs that are available now & he went into remission for 13yrs.
He died at 82 & he got Wegs when he was 69 so he had a good run & we will beat this ,every year they leare more. Rita
13 years with out drugs, and 82 not a bad innings, we all wish we could have each other longer though, I am on the Bactrim also thats to prevent Bacterial infection, whats the trimethoprim for, still on 60mg pred, and kidney functin at 20%, get more results next wed, so see what they are then, its seems such along wait to get results, I wait with anticipation, and wide awake, yep thats the pred, I was awake for 2 days straight this week, that knocks it out of you, No dought in my mind what so ever we are going to beat this Rita, we will have to get an Aussie Annual Wegs Party happening to celebrate wooping its but.
Stay Safe Rita
Cheers Steve
Welcome, Steve. I'm pretty new here, too. I am on the same drugs as you are, with the addition of Bactrim. No kidney involvement for me, luckily, and I'm sorry there is for you. Best of luck, I'm glad the joint pain is gone, and the drugs should start doing the rest of their work before too long.
Anne in Olympia, Washington, USA
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