Update on Gragnoc

[Gragnoc]

Hi Everyone,

I went to the Mayo Clinic to see a nephrologist yesterday with the help of my best friend. The nephrologist is very concerned about my high urine protein levels, the pain in my sides, and tenderness of my right side. She ordered a CT Scan of my Abdomen and Pelvis and a Rheumatology appointment for tomorrow. She also ordered blood tests, urine test, and 24hr urine test. To be honest, I am worried about losing both of my kidney to Wegeners .

Today, my best friend is checking on me to make sure I am OK.

Well know more tomorrow.

Greg

[annekat]

Thanks for the update, Greg. I know there are people on here who have had kidney involvement and recovered from it, and not lost either of their kidneys. It's good if they are catching it early. I don't have kidney involvement but worry about it sometimes, too, as it appears it can sneak up on us. I wish the best in the test results and in dealing with it effectively.

[mishb]

At least they are being thorough in all of the tests Greg.

Good luck with tomorrow's appointment and best of luck for good test results

[sbeach78]

I also have kidney involvement, its actually how the diagnosis of WG came about for me. I am still learning myself, but to let you know my kidney function went from almost zero percent in the last six months it is at thirty percent. That's just with the standard treatment for WG, and a Renal Diet. My kidney function is improving and I hope yours does too. Trust me I know what its like for them to come in and say Acute Kidney Failure I thought I had just got a death sentence, but things will get better. Stay Positive and remember there's always people here who understand.

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[Gragnoc]

My brother took me back to the Mayo Clinic on Friday, saw a Rheumtologist, and had a CT Scan. The CT Scan confirmed kidney inflammation caused by the Wegeners Granulomatosis. Both the Rheumtologist and Nephrologist recommended that I start Rituxan immediately before my kidneys get any worse. I agreed with the both of them and fortunately got pre-approval from my insurance provider that day for the treatment. The first session of Rituxan was scheduled for the next day at the Infusion Therapy Center.

The next day my brother took me to the Infusion Therapy Center. The first session of Rituxan went without incident and they also gave me an extremely high dose of prednisone.

[Pete]

It will take a few weeks before the rituxan kicks in fully. Glad they caught the kidney involvement early and are treating appropriately. Mayo is a good place...

[Gragnoc]

Went to the Mayo Clinic with my best friend Eric on Saturday for my second Rituxan treatment. The infusion went a lot quicker this time since they pushed 100mg of Prednisone instead of 1000mg IV Prednisone. After the second treatment, Eric drove me home while I slept in the passenger seat of my car.

That night, I celebrated my 15 year Anniversary with four good friends.

[lag713]

That night, I celebrated my 15 year Anniversary with four good friends.

Congratulations on your 15 year anniversary! Spending time with good friends, the people who matter in your life, puts everything in perspective. I'm glad your second round of treatment went by faster and without incident. I hope you feel better and the labs look better soon.

[Gragnoc]

Thank you lag713!
The Mayo Clinic called me the other day and they have my labs scheduled already after the treatments have been completed.

[Rose]

Greg I see you were diagnosed in 1999. So Wegs has attacked your kidneys 15 years later? I went undiagnosed for 17 years as Wegs had attacked my gastrointestinal system but this was only confirmed when Wegs dissipated and attacked my sinuses, lungs, kidneys etc. When the doctors saw that my gastro symptoms improved drastically after I started treatment for Wegs, a colonoscopy was performed and Wegs was found....they never looked for it before!!

Those of you who do not have kidney involvement should be aware that it COULD happen one day and early detection is vital. Kidney involvement in the early stages is usually asymptomatic but urine test strips would inform you if all was not well with your kidneys. I think all Wegs patients should do weekly urine test strips to ensure early detection and for those with known kidney involvement, it would reassure you that all is well and you are still responding to treatment.

Rose