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 :crying:.

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.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[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

[drz]

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

This advice of being vigilant about possible kidney damage was one of Jack's frequent warnings since he lost his kidneys in a very short period of time. There generally will be no symptoms you notice till the damage is done if Wegs launches a serious attack on your kidneys..

[lag713]

I have blood tests and urinalysis done every 12 weeks. I asked my doc if she was confident that the testing would appropriately detect any kidney involvement. She decided to give me weekly urine dipstick test strips with orders to get bloodwork and urinalysis done at the lab if the weekly test is positive. I do wonder if the strips are sensitive and accurate enough but it's better than nothing. I don't have any kidney involvement currently but I want to stay vigilant.

[Rose]

Yes. I also have tests every 3 months or so but the Wegs dog can suddenly wake up and attack....maybe just days or weeks after a test showing all is well. I was in contact with a Wegs patient here in South Africa a few years back. He had recently been diagnosed with Wegs affecting his lungs and sinuses. He was grateful his kidneys had not been affected. This man died about 9 months later. Granted they were having problems with him responding to treatment and they were battling to get the disease under control but within weeks of being given the all clear as far as his kidneys were concerned, he went into complete renal failure. This is not unheard of. It can happen so everyone must be aware. it can also happen even if you seem to be responding to treatment. Rare but possible


Rose

[drz]

I have blood tests and urinalysis done every 12 weeks. I asked my doc if she was confident that the testing would appropriately detect any kidney involvement. She decided to give me weekly urine dipstick test strips with orders to get bloodwork and urinalysis done at the lab if the weekly test is positive. I do wonder if the strips are sensitive and accurate enough but it's better than nothing. I don't have any kidney involvement currently but I want to stay vigilant.

I have month labs but my Weg consultant at Mayo thinks the urine test strips are a pretty good precaution. I do have to admit I some times forget to test. I think it is safe to skip it in the weeks you have regular urine testing for lab work.

[Gragnoc]

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

Rose,

Yes, Wegeners has attacked my kidneys again 15 years later. My kidneys were also attacked back in 1999.

[Rose]

[QUOTE=Gragnoc;88289]Rose,

Yes, Wegeners has attacked my kidneys again 15 years later. My kidneys were also attacked back in 1999.[/QUOte

Were you on medication when this recent attack happened? Were you being monitored?

Rose

[Gragnoc]

Rose,

I wasn't on any medication when the recent attack happened. I was in re-mission for for about 2 years and was doing good.

[Rose]

Wonder how many WG patients in drug free remission relapse. My Rheumatologist has told me that in his opinion, I should stay on immune suppressants for life to prevent relapse. My Nephrologist thinks I should have been weaned off them a long time ago as I have been stable and my Pulmonologist has said in the past that I should be off medication but now she agrees with the Rheumatologist. I guess there are risks no matter what you do.

Rose

[lag713]

Methotrexate seems to be recommended as a maintenance drug. I've also read that azathioprine is an acceptable maintenance drug. However, my rheumatologist had one patient with a drug free remission lasting 20 years (I'll continue dreaming of that possibility).

Wegener's Granulomatosis - Types of Vasculitis (http://www.hopkinsvasculitis.org/types-vasculitis/wegeners-granulomatosis/)

" Untreated Wegener’s granulomatosis is fatal. Prednisone may slow progression of the disease but by itself is insufficient to arrest the disease. Respiratory tract disease usually progresses slowly, but renal disease can progress rapidly and therefore warrants urgent evaluation and treatment. With the traditional treatment of prednisone (initiated at 1 mg/kg daily for 1 to 2 months. then tapered) and cyclophosphamide (2mg/kg daily for at least 12 months), more than 90% of patients improve and 75% remit. However, 50% of the patients who later remit also relapse, and oral daily cyclophosphamide causes serious toxicity. Short-term toxicity includes cytopenia, infection, and hemorrhagic cystitis. Long-term use of cyclophosphamide in patients with Wegener’s granulomatosis more than doubles the risk of cancer overall, increases the risk of bladder cancer 33-fold and the risk of lymphoma 11-fold. Monthly intravenous cyclophosphamide appears less toxic but also less effective. Weekly, methotrexate appears to be an effective alternative for Wegener’s granulomatosis that is not immediately life-threatening, and it also appears to be beneficial in maintaining remission."

http://rheumatology.oxfordjournals.org/content/49/11/2181.full

This focused on major disease flares. Less consideration has been given to "minor" disease flares that only include arthralgia, sinusitis, and rhinitis.

[Gragnoc]

Went back to see my Rheumatologist and Nephologist last Tuesday after finishing the 3rd and 4th (final) Rituxan Infusions. They ran blood and urine tests to see if there is any improvements after the Rituxan Infusions. I was extremely happy with seeing massive improvements in my tests results. I will going back to the Mayo Clinic for followup doctors appointments in 2 Months. Unfortunately, they decided to taper my Prednisone dosage very slowly for good reason.