Hello from East Central Illinois

**Il_Randyb** · 11-05-2013, 12:46 PM

Hello, I am 55 year old male, diagnosed in a March of this year. I have CKD as a result of Wegener's. I had treatment of RitoxinMab this summer and am due now for my first antibody test.

I was also diagnosed very recently with optic nerve inflammation and I have a followup visit with an ophthalmologist soon.

Randy

**Pete** · 11-05-2013, 01:46 PM

Hi Randy,

Welcome to the forum. You'll get a lot of useful info here from folks who are "experiencing" GPA/WG. I don't know how close you are to a GPA/WG specialist. Seems like you're probably mid-way between Mayo Clinic and Cleveland Clinic. Both have great docs who treat this dumb disease across a relatively large number of patients. You might want to ask your local doc to consult with a GPA/WG specialist at Mayo or Cleveland to be sure you're being treated according to the latest protocols.

Something I've learned is to suspect that an odd ache or pain is more likely to be a sign of a flare rather than from aging (I'm 67). This disease can be very subtle and insidious.

Good luck, better health, and ask any questions you may have.

**Debbie C** · 11-05-2013, 01:55 PM

Hi Randy, welcome to the forum ( or our little but fast growing family ) Sorry you had to find us but glad you did. I agree with everything Pete said,make sure you get a good Dr.
What is "CKD" I've never heard of this before.Hope all goes well with your nerve issues...and keep us posted on anything you want to talk about

**annekat** · 11-05-2013, 04:15 PM

Welcome, Randy. I'm glad you found us. Sounds like you are getting good treatment, but do pay attention to those on here who recommend specialists at the few well-known centers for vasculitis treatment in the country. Feel free to ask any questions, share whatever you want, rant and vent, whatever you need to do here. We are here to listen and offer support and information. You will feel a lot less alone by staying in touch with this excellent group of people who also happen to have Wegener's. Please continue to check in and keep us updated on your progress.

**Alysia** · 11-06-2013, 05:59 AM

Hi Randy,
welcome to the forum.
I also don't know what is CKD so I googled it. is this what you have ?
Chronic kidney disease - Wikipedia, the free encyclopedia
sounds tough.
It sounds that you have to deal with too much issues at once.
I hope things will be better from now on. good luck and continue to write.

**mishb** · 11-07-2013, 12:35 AM

Hi Randy and welcome.

Quite a number of people on here also have CKD, so you have come to the right place.

No question is too silly to ask and you may be helping someone else, who was too scared to ask for themselves.

We hope that you can also share what you have learnt about WG and also the kidney disease, so that in turn, you can help others.

Take care, and I hope the antibody test comes back favourably.

**Il_Randyb** · 11-07-2013, 11:11 AM

Originally Posted by Alysia

Hi Randy,
welcome to the forum.
I also don't know what is CKD so I googled it. is this what you have ?
Chronic kidney disease - Wikipedia, the free encyclopedia
sounds tough.
It sounds that you have to deal with too much issues at once.
I hope things will be better from now on. good luck and continue to write.

Yes Chronic Kidney Disease

**drz** · 11-09-2013, 08:13 AM

Originally Posted by Il_Randyb

Hello, I am 55 year old male, diagnosed in a March of this year. I have CKD as a result of Wegener's. I had treatment of RitoxinMab this summer and am due now for my first antibody test.

I was also diagnosed very recently with optic nerve inflammation and I have a followup visit with an ophthalmologist soon.

Randy

Kidney damage from Wegs is not unusual if there was a delay in diagnosis and treatment. Many of us have it. Usually though the treatment will halt the damage and often there is some recovery. My kidneys recovered from low teens to about 50 % of normal function after several months of treatment and have remained at those levels for past couple years. A flare though can cause rapid changes and more damage and not be detected till much damage is done so careful ongoing monitoring of kidney function and wegs activity is important.

**Il_Randyb** · 11-09-2013, 08:26 AM

Yeah I have been hanging under 15% of kidney function with some signs of slight improvements however this has gone on now for 7+ months so the odds of recovering my kidneys has greatly decreased. I am heading to Barne's next week in fact to start the process to get on the Kidney transplant list.

The good news today is that my ANCA, ESR SED rate, and C-reactive Protein labs all indicated that my Wegener's is "under control". My doctor does not use the word remission until the patient is off all controlling medications and there are still no signs of the disease.