Update on Gragnoc

[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

"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.o...9/11/2181.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.