New Member

[Harold]

I am recently(January) diagnosesd with Wegeners and have kidney involvement and am on Dialysis. I just completed a series of plasma exchanges, had 2 cytoxin treatments and 60mg of Pred. I was looking for others who had renalfailure and had success with these or other treatments

[Sangye]

Hi Harold, welcome to the group! Everyone here is very helpful and we have a huge knowledge base to draw on. I don't have kidney involvement but many others do. Many of our members have had dialysis and can share their experiences.

[Jaha]

Welcome to the forum Harold. You'll be glad you found this most informative site. Sorry you had to join us, and I wish you all the best with your tx's. There are many on this site who have Kidney involvement and will be willing to share anything with you.
Jana

[annekat]

Hi, Harold! No kidney involvement for me either. But you will be hearing from those who have it. Welcome to the forum! I'm glad you found us, and this is a big part of our everyday lives no matter what type of Wegener's complications we have. You will find people whose experience is similar to yours, I'm sure. We hope to hear more from you in the future.

[HopeinTN]

Glad you found the forum. This is such a great place to share your questions, concerns... Welcome!

[Debbie C]

Hi Harold.. Sorry to hear you are having such problems right off the bat.You have joined a good forum and I am sure you will get alot of questions and concerns answered. Good luck in your treatments

[Al]

Harold, these things are truly annoying, but perhaps you can at least find a few friends here. I am one of those with renal involvement. I recently presented my long-form narrative, which I am too lazy to retype, but here is the link:

http://www.wegeners-granulomatosis.com/forum/weggies-stories/2420-recapitualtion.html

Al

[Dryhill]

Oh good now that someone with renal involvement has answered I can say hello to you Harold. As yet another person that has no renal problems (well I hope not, but my last urine dip sample did show protein and blood in my urine) I thought I should wait before welcoming you to the forum.

Jim

[annekat]

Harold, while you are waiting around for more people with renal involvement to reply, you might do some searches of the archives, just plugging in "kidneys" or whatever. It can be time consuming sifting through all the posts, but I have found out a lot of stuff that way.

[drz]

I had kidney involvement and sent a private message to him.

[annekat]

I had kidney involvement and sent a private message to him. Glad to hear that!

[Rose]

Hi Harold and welcome.

I am surprised to find that you have only had a few responses from members with kidney involvement considering that statistically up to tree quarters of diagnosed patients do have kidney involvement to one degree or other. On diagnoses I was in Stage 3 CKD but had no renal symptoms. I also did not have any respiratory symptoms though my lungs were full of nodules which were discovered on hospital admission. Sinus, ear and hearing problems, developing daily temperatures, night sweats and eventually muscle and joint pains which left me totally incapacitated eventually saw me admitted to hospital after about 6 months. Knowing what I know now I presented with classic symptoms but hard to get a diagnosis when your GP does not even know the disease exists. No excuse though for the ENT whom I saw OFTEN for 4 months. Anyway, I suppose I was lucky as if the joint and muscle pain had not been so severe which forced them to do something, diagnosis would have been delayed and I could have ended up with even worse kidney involvement.

It has been 4 years since diagnosis and 3.5 years since drug induced remission. My kidneys have remained stable.

Don't hesitate to ask any questions, there will always be somebody here to answer or to offer advice as to where to get the answer

Rose

[annekat]

There's been lots of discussion about renal involvement on here, and I'm sure the people who have it either have sent Harold a private message or just haven't tuned in yet....

Rose, I'm still trying to give my ENT a break for not catching my Wegs for 2 years or more, because the symptoms were so much like what he deals with everyday. ENTs are being blamed for this a lot. Maybe they should be, at this point. I hope mine has learned his lesson and will be more aware in the future. He is a good doctor overall, with a good reputation.

[Al]

Harold, also see today's thread by Stephanie, whose husband John has serious renal involvement.

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/2448-overdue-update-john.html

Al

[AmyA]

Hi Harold and welcome. I too am a new member and have found a wealth of information here that i couldn't find elsewhere. People her are so nice and willing to help answer any questions you have no matter how big or small. Sorry you have to be here, but glad you found it just like I did.

Amy

[elephant]

I had kidney involvement and got a kidney transplant from my brother 22 years ago. My kidney is working great! What do the doctor say about your kidneys?