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Greetings Sangell!
Welcome to the World of Wegener's. Sorry to hear about your kidneys--I too wasn't diagnosed until in complete renal failure. I wasn't given cytoxin as Mayo clinic said the only...

Hi Joni,
I have had a red, hot painful rash on my lower legs and feet with swelling so bad that I couldn't walk. I believe this to be erythema nodosum. My was biopsied and also named panniculitis...

They initially were trying to figure out what I had and making sure I wasn't having weggie lung involvement. There is no treatment for this--no anti virals. Hence I have spent more time in hospital...

Hi Debra, sorry for not being clearer. You are correct--we cannot get the nasal version of the flu vaccine as that contains live virus. But to test you for influenza/flu they take a sterile swab to...

I have had a rough October. Dr finally sent me to ER as the antibiotic dose I was taking to treat a nasty cough and wheezing wasn't helping. Chest ct and X-ray came back with unspecified airway...

I was diagnosed with Weg's when I was 27, 14 years ago! I have had cold hands/feet since then too. I have noticed that when my hands are cold, they actually "hurt" and are discolored until I rub them...

Welcome George!
I'm sorry to hear that you have been going through so much these past six months or so. I too, wasn't diagnosed until I was in complete renal failure. I was much younger than you...

Jacquie,
My ENT has prescribed a sinus nebulizer where I nebulized a steroid and then followed with 2 seperate antibiotics also through the same system. I did this regime two times a day for a month...

Hi Tracy,
I have been on cellcept for over 13 years, probably 8 or more of those years without any prednisone. I may have been "smoldering" off and on over that time period but none of the Drs I was...

Welcome Bobbie!
I'm glad you finally got an accurate diagnosis! I too had several mis-diagnoses of pneumonia prior to doctors figuring what was really going on. Sorry to hear that you are on your...

I have been on Cellcept for my Wegener's induced kidney transplant as one of my antirejection meds. The other anti rejection med I am on (Rapamune) I don't believe does much for the Wegener's. I was...

For the 2nd infusion they will administer the Benadryl via IV rather than a pill and give me a larger dose prior to treatment I believe. I know 2nd infusion is usually administered at a quicker...

So glad to hear your infusion went well! Are you doing 2 infusions or 4?

I just had my first infusion last Wednesday, and like Carrie, I had a reaction too. I have not had any sickness since but...

Hello Barbara,
Here in the states we transplant through Wegener's. I lost my kidneys before I could be officially diagnosed and was on dialysis for 10 months until I was stable/healthy enough for...

Hello Laurie and Darren,
I am also in Chicagoland--I go to Northwestern for my care and am pretty happy with everything they've done for me over the past 14 years. I had my first Rituximab infusion...

Hi Charlotte,

Please do keep a close eye on everything! The kidney symptoms I listed earlier are more for acute renal failure--you can sustain kidney damage without physically noticing any true...

Hi Charlotte,
Just a few thoughts...

I have kidney involvement and am on prednisone for my flare...the Prednisone is making my kidney very happy right now and my kidney numbers are the best they...

Barbara,
I too am not certain that I understand when you say that dialysis is a choice. You could opt for Peritoneal Dialysis over Hemodialysis where you can connect to your machine over night and...

Thanks to all of you for your welcomes and encouraging sentiments! I am looking forward to receiving my first infusion but am a bit concerned as I generally am the one who does not react well to...

Welcome Vegemite!
Thank you for sharing your story. I just joined the forum a few days ago myself! I share many of your original symptoms (minus the pregnancy!) with the travelling joint...

Hello All!
I have been directed to your site by a fellow Weggie family member who works with my sister. I've been perusing the forum now for a few months and decided today to finally join the fun!
...

Barbara,
When I was diagnosed upon renal failure 14 years ago I went on dialysis for 10 months prior to receiving a transplant. I received my dialysis treatments 3 days a week, each session was a...

This is my first forum post....
Brett, I believe that as long as you are on steroids your allergies probably shouldn't be much of an issue. Depending on how your docs treat you long term will give...