Weg flare without any detectible anca markerrs possible?

[usrgbt]

Thanks, Anne!

[Alysia]

I just found this :
Performance evaluation of three assays for the detection of PR3-ANCA in granulomatosis with polyangiitis in daily practice

[drz]

Thanks so much for the information Annekat. I have not been on bactrim since my original bout with Wegener's when I was on it for about a year. Is it something I should discuss with my doc about taking it regularly? I suspected the lack of anca markers didn't preclude a flare. My inflammation markers were very high. Lungs have taken a beating. PFT reveal about 30% loss from last pre illness test. Anyway, thanks again, and any I'm grateful for any ideas, suggestions, or things I should talk to my doc about.

What is total loss of pulmonary function compare to normals your age?

Is pulmonary rehab an option for you. I found it very helpful for me.

[drz]

I just found this :
Performance evaluation of three assays for the detection of PR3-ANCA in granulomatosis with polyangiitis in daily practice

Thanks for sharing this reference.

[usrgbt]

I'm not sure what normal pulmonary loss for my age (71) is. All I know is that I'm on full time oxygen at 4 liters at rest, and 6 liters w/activity as a result of the recent illness. Prior to the recent situation, I was only on oxygen at night at 2 liters. I'm hopeful I can regain a little function with continued treatment. I have had pulmonary rehab and it did help, but probably not able to do right now because of weakness.

[usrgbt]

Thanks for sharing!

[Tom]

Diagnosed with WG about five years ago, affecting primarily my lungs and causing moderate scarring and interstitial lung disease. On 2 lt O2 at night. Have been doing fine and in remission until about 3 months ago when my energy level suddenly plummeted and I desaturated precipitously upon standing. Blood test which I had been taking regularly since being diagnosed revealed that my white and red blood cells as well as other blood results had declined significantly out of acceptable range. Anca markers were non detectable. After some delay, I was finally admitted to the hospital at which time I was diagnosed with pneumocystic pneumonia. In addition, they diagnosed me with myelo dysplasia. Because of the non detectable anca markers, my rheumatologist does not believe the Wegner's is flaring. My question is is it possible for Wegners to be active without anca markers? I am currently being treated with rituxan, 80mg prednisone, and vidaza for the dysplasia. Am on 4 lt O2 at rest and 6 lt with activity, but still rapidly desaturate rapidly upon standing or movement. Anyone heard of anything like this combination of symptoms or have any suggestions. Anything is appreciated. Never been so out of gas in my life!

Thanks,
Gary
Lake Saint Louis, MO

I wish I could answer that question but early on in my journey my RA told me that there is no blood test or lab draw that can say if you are having a relapse of the other way, in remission. He said that as long as I feel well and now symptoms and the blod work looks as normal as it could, I would be considered in remission. He admits that it may not be the case and that is why I am monitored regularly and I need to listen to my body. Just like when I went with a full blown flare up after fighting symptoms for a couple years, the purpura was a big clue and then reading my prior history with sinus and joint pain and swelling. That only warranted a biopsy. I had a lobectomy 2 months before because of a growth t hat wasthoght to e cancer because I have a history with cancer but turned out to be what was called at the time a hematuria tumor or something like that which is benign. The purpura led them to a biopsy of the kidneys and then had to wait for lab results although the RA was certain of Wegs but had to wait for confirmation and my treatment was hard because I had stage 4 colon caner in 2006 and some of the meds for treatment was used for cancer treatment also and I could only have so much of it in a lifetime. But anyway, personally I would say you are having a flare up and should see the Doc. I am on 2 liters of 02 and was told I could go to 3 liters but resisting right now. Good luck to ya.

[D.B.]

Thanks Deb, for your information. It seems clear that relying on anca markers to determine Wegener's activity is not reliable and should only be considered one part of the puzzle. I'll be talking with my rheumatologist about it. I appreciate it!

hi gary hope u r feeling ok. yup this disease is quite a puzzle. as patienta we need to b in tune w our bodies to notice changes that arent quantifiable by lab work. how long have u been @ 80 mg. did dr mention when start tapering? 60 mg makes me so irratic and hungry but also gets my energy level back up.

[usrgbt]

Thanks for the information, Tom. I appreciate it. I don't think my RA is convinced I had a flare, but I'm pretty sure I did. The pneumonia and Mylea Dysplasia has complicated things, but I am slowly recovering and have gained quite a lot of my strength back. The prednisone really got to my legs and they are still pretty weak. I'm down to 40mg daily pred. Lungs took a beating and I'm on 4 at rest and 6 with activity, but it's really not enough.Desaturate when I get up,but recover fairly quickly when I sit back down. Anyway,it is what it is. Hopefully I can recover a bit more.

[usrgbt]

I know what you mean about the pred. I'm down to 40 mg daily, but still want to eat everthing I can get my hands on. The other problem is it makes me so shaky I can barely feed myself sometimes. It also took a toll on my strength, but have started recovering some with the reduction of the pred.