Gidday everyone from down town Brisbane Australia

[reb876]

My name is Steve, Recently dx as a wedgie on 19-12-2011, Only thing I new about a wedgie before that was what we used to give and get as kids when we were at school, I have been reading this site for a few days now and have learnt so much from you all and feel 100% more confident in dealing with it now, cant thank you all enough for all your stories, helps so much mentally when your talking with people that know what your going through.

I have been up all night have insomnia tonight, have not been getting it every night but only been on the meds for 7 days. The kidneys are what copped it with me, dropped down to 12% function, up to 20% yesterday and creatanine is starting to drop heaps already so all heading in the right direction so far, few swellings here and there in the hands, shoulders, feet and knees but the pred soon put them at rest.

I am on 100mg meth and 60mg pred and all the rest of the lollies they give you to protect or keep at bay all the other gremlins that want to attack you, they always say the cure is sometimes worse than the disease, in our case hopefully they will find a cure.

I have a pretty weird or funny sense of humor how ever you take it, and I come out with some different sayings every now and then that maybe some of you wont get or understand, Just know that I will be trying to keep a positive attitude and a sense of humor to what is a shitty situation for all of us.

I will leave you all for the time being with by best wishes and sincere thanks for the support and look forward to everyone kicking wedgies arse in 2012, also here is a little food for thought.

Life is a **** sandwhich you just have to get use to eating the crust

Take Care Talk Soon

Steve

[Al]

Welcome, Steve--welcome to life on the crust. Just what we need--another weggie with a sense of humor. Hah! Actually, you will find that we are a pretty comical bunch, if occasionally manifested in a sort of a Keystone Kops fashion. For some reason, facing down a potentially fatal disease makes us appreciate the funny stuff. Who knows? Maybe it makes us more tolerant. Despite our diversity, we all get along well. (Don't we...? Most of the time...?)

The one thing that strikes me immediately is the inclusion of MTX, even though your kidneys are in bad shape. MTX is not considered a kidney friendly med. More often in such cases , Imuran or CellCept is preferred.

I know about the pred insomnia. Best, I think, to resist the urge to clean out your garage, or split a cord of wood. Maybe keep a notebook by the bed for those brilliant, if, by morning, illegible nocturnal thoughts.

Al

[reb876]

Sorry Al my bad, I am not used to all the abbreviations yet its 100mg cyclophosphamide not mtx

[Al]

Sorry Al my bad, I am not used to all the abbreviations yet its 100mg cyclophosphamide not mtx

Ah. Makes better sense. CTX (cyclophosmamide, aka cytoxan) is, of course, nasty in its own right....

Al

[dennis2512]

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

[Rita.M]

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.

[reb876]

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

[Rita.M]

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

[Dirty Don]

Life is a **** sandwhich you just have to get use to eating the crust

That's OK, I like sandwiches...LOL...welcome Steve...this site is wonderful although it can be a bit blithe and lighthearted in here (we're all so sad we have this disease that we just can't keep a good laugh down!)...and that attitude along with all the knowledge and experience gathered in one place...it's quite OK in here!! You'll like it! Best of luck!

[Widthofacircle]

Gidday Steve and welcome.
As you can see from the previous replies to your post you are in the right place. Tough to be dealt a bad hand with wegs but there you go. On here you will find support and information that will be of huge benefit to you in dealing with your new Christmas present.

Lots of us Irish down under at the moment due to the recession here. Keep an eye out for them mate. They are a good bunch. By the way, they like an odd beer.
Brendan
Brendan