how do you know when your in remission?

[alexciasmom]

So whith all that go's on with wg how do you know when your in remission? Is it blood work, systoms gone,.or a.a.combo? And what kind of systoms stay if any? And how do you know if or when you come out of remision? These are questions for my dr I know but I would like your views on it. Thanks all...

[RudiK]

Hello Alexiasmom, my doctors used a combination of blood test (C-ANCA and P-ANCA cells) and urine analysis (red blood cells) to "declare" that I was in remission.

[delorisdoe]

knowing when you are in remission is easy. tests and how you feel. knowing when wegeners has come back is really hard-and for me very painful

[Brooke]

For myself, I usually have to go on how I feel since my blood work and urine have always been good.

[Sangye]

They use lab results in combination with signs/symptoms. Wegs specialists use the BVAS (http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf), which you can measure yourself.

I don't agree that determining remission is always easy. My docs--including Wegs specialist Dr Seo--thought I was in remission for 2 years when I wasn't. It was only in retrospect that we realized I'd had "smoldering" Wegs all that time. My labs typically look great. We have to go by symptoms.

Remission generally occurs as a gradual process-- labs and signs/symptoms gradually improve.

Also, the ANCA has been proven to be accurate only for initial diagnosis. When the ANCA was first discovered researchers hoped to use it to identify a flare brewing, or to measure how well someone was responding to a particular treatment. However, in the majority of people ANCA results are not accurate to measure disease activity. The ANCA might stay elevated even when one is in remission, or it might be low even with highly active disease. There are very few people whose ANCA is a reliable indicator of disease activity.

[delorisdoe]

LOL...my definition for me of remission does include episodes of smoldering wegs. Infact, I think I may be the queen of smoldering wegs. My labs never look great when i am smoldering but I dont often get sick enough to want to treat it again. I personaly found it alot easier to recognize remission as my pains went away, I no longer had blood in my lungs and my labs agreed with these symptoms...I just find it really hard to figure out when I am out of remission. A cold can feel like a cold but then be a weg flare but still feel like a cold. I find it confusing.

[Psyborg]

I'm in the boat of prednisone making all my labs look good. I went from maxed sed rate to normal with nothing but prednisone. At the time I felt so much better I thought I was fine again, it's only after the fact that I figured out I wasn't in remission, even when the dr thought I was. Basically, pred work very well at masking most of my symptoms. I'm afraid my take is this is one of those things that varies widely by person.

[drz]

knowing when you are in remission is easy. tests and how you feel. knowing when wegeners has come back is really hard-and for me very painful

The above plus lack of serious symptoms. Some residual symptoms can still be present and doctors may consider you in a drug induced remission--meaning no new treatment required at present time--just continuation of present med regime. You can have minor flares requiring minor adjustments. Big flares mean bigger guns.

[vdub]

Theoretically, I am in remission, but I have no idea how the docs arrived at that conclusion.

I'm at that awkward age where it is difficult to tell if my pains are from getting old (I'm now 60) or if it is from gpa. Prior to dx, I had no pains and was strong and healthy, but now I have lots of muscle/joint pains and I know when I over do things. Very difficult to tell if it is from one or the other.

So how did the docs tell? Beats me! My blood work usually has a half-dozen items out of range. I'm used to it now and when I pick up the test results, it's kind "ho hum, same stuff, different day".

Am I in remission? Hmmm, let me get back to you in, say, 5 years or so.... :-)

[pberggren1]

I have never even talked to my doc about remission. I have had so many complications and other things come up at least once a month for the last few years that I really don't think I have been in a full remission, medicated or not, since 2007.

[elephant]

This is my opinion if you have joint or muscle pain, it appears to me that it is abnormal. There is a underlying reason if you have joint or muscle pain..is the joint pain/muscle ache a side effects to a medicaiton? Medications like the ones that lower your cholesterol can cause muscle pain. Or do you have an additonal autoimmune disease...like RA, or joint pain from osteoarthritis, or a WG mini flare. It depends where the pain is located is it all over or one spot like the shoulders? Sometimes pain can come from a spinal cord ( arthiritis or degenerative disc disease ( wear and tear as we age)...ect. I am always trying to figure things out, my Rheumy told me last time that Im a very good analizer. Probably what she is saying really is that I am a pain in her butt!

[Sangye]

vdub, many doctors will blame pain on getting older. If you didn't have pain before you got dx'ed, then the pain is not likely due to your age.

[Widthofacircle]

I have similar experience. While I am generally well most of the time, I still experience a couple of days now and then when I get joint pains, that clears up and I might get a week of bloody nasal discharge, then it might be a couple of days where I am extremely tired.
Like you vdub I don,t know whether this is always caused by Wegs or sometimes age related
Brendan

[delorisdoe]

This is my opinion if you have joint or muscle pain, it appears to me that it is abnormal. There is a underlying reason if you have joint or muscle pain..is the joint pain/muscle ache a side effects to a medicaiton? Medications like the ones that lower your cholesterol can cause muscle pain. Or do you have an additonal autoimmune disease...like RA, or joint pain from osteoarthritis, or a WG mini flare. It depends where the pain is located is it all over or one spot like the shoulders? Sometimes pain can come from a spinal cord ( arthiritis or degenerative disc disease ( wear and tear as we age)...ect. I am always trying to figure things out, my Rheumy told me last time that Im a very good analizer. Probably what she is saying really is that I am a pain in her butt!

I like that "mini wg flare". Of course I dont like that I have been in a mini wg flare for more than a year now.

[drz]

I have similar experience. While I am generally well most of the time, I still experience a couple of days now and then when I get joint pains, that clears up and I might get a week of bloody nasal discharge, then it might be a couple of days where I am extremely tired.
Like you vdub I don,t know whether this is always caused by Wegs or sometimes age related
Brendan

I don't think "bloody nasal discharge" can be related to old age. for most of us that is first sign of GPA. Mine was attributed to dry air and allergies for several years but went away after treatment for WEGS. It has only returned during my last flare.