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Minneapolismark
12-17-2010, 04:26 PM
It bugs me a bit that there seems to be no solid definition of remission. I would like to get your input on the topic. I literally have no idea when one is in remission or not. Does it mean no symptoms, normal stats, no drugs?

right now I am on MTX, Folic Acid, Pred, Atenolol, Citalopram, Lisinopril, and Vicodin. My lab tests show that my numbers are all more or less nominal, and I am trying to taper off pred.

I have intermittent symptoms and generally feel pretty crappy most of the time. However I feel loads better than even a month ago. I can now go up a flight of stairs on a good day, without feeling like I'm having a heart attack.

So when is this considered to be remission? I know my rheumy and my (hopefully) specialist at the Mayo will have solid ideas, but I would really appreciate knowing your experiences and observations.

Does remission mean "business as usual?"

Jack
12-17-2010, 08:36 PM
This one has cropped up more than once on the forum and the conclusion seems to be that it means different things to different people (so just choose a definition that you like the sound of! :wink1:). At the end of the day, it is just a label and does not affect anything much. It is how you feel that matters.

andrew
12-17-2010, 08:42 PM
After much consideration over the years I have determined that remission, at least for me, is a state of mind. Yes, I'm serious. My ANCA has always been elevated since diagnosis and is slowly coming down. ANCA, for me, is the marker of disease activity or lack thereof. Seeing as it's a marker of disease activity I (and my Doc) can be reasonably sure that medically I'm not in remission yet and considering how s-l-o-w-l-y it's moving down, will not be in remission for a long time to come, if ever. However, my psyche disagrees. It tells me that I'm not exhibiting any direct outward symptoms of WG. It tells me that I'm leading the same (ok, NEARLY the same) life as I was prior to diagnosis. Therefore it tells me I'm in remission. Yes, this is a purely fanciful, concocted, made up state of mind based on my many years of medical training and degrees but I like it and it's nice and warm in here ;)

The fact that I catch pretty much everything that's going around, can have a chest infection for months, have vastly reduced lung capacity as a result, have some strange spots on my lungs and need to take 9 or 10 pills every day to keep the ol' fires burning is completely irrelevant. There, does that help? :-)

In all seriousness I think it would be very hard to define remission. Why? Because as we all know WG is different for everyone and therefore we can hypothesize (is that the right word?) that remission will be different for everyone as well. Is remission perfect test results and a life without drugs? Sure, it might be for the guy across the road but I might be considered to be in remission with ten pills and slightly sub-normal blood results. It all depends on the doc that's been treating me for years and knows my patterns and idiosyncrasies of which there are oh so many.

I think attempting to define remission will be like attempting to untie the Gordian knot but hey, I'm willing to give it a shot.

chrisTIn@
12-17-2010, 09:01 PM
I'll give it a shot too. :mellow:
I think remission can be defined as a more or less stable state of body and mind (i.c. of the WG-patient).

A state in which the disease is under control as much as possible in the given situation.
(Some people on this forum will say: The time when the Wegs-dog is asleep...).

This state of control is achieved with or without medication.

Sangye
12-18-2010, 01:38 AM
I love all those definitions.

If you want to know how the Wegs specialists determine remission, here's the BVAS evaluation. Read the first page with instructions and definitions. (Definition of remission is at the bottom). The second link is the actual scale, which you can score yourself.
Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvas.html)

Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvasform.html)

JanW
12-18-2010, 02:20 AM
I agree with everyone here and can safely say that compared to one year ago today, I am in remission. I have no joint pain, my nose is no longer collapsing (that's just done with, unfortunately), no nasal crusting/bleeding, no fatigue, no shortness of breath (although that was corrected surgically and the extent to which it closes up again probably doesn't have much to do with remission -- sigh--).

I am in a medicated remission, but have no side effects from the meds (mtx, fosamax, folic acid). I want to get into an unmedicated remission to have surgery to correct my nose so will start reducing mtx in March/April, and hopefully be off of it in a few months (only on 17.5 mg/week).

I say all of this with the caveat that at my very worst, I was able to complete 'tasks of daily living' and was not disabled. Although the docs made clear that I was at risk for sudden death from the subglottic stenosis, it was luckily caught in time.

Minneapolismark
12-18-2010, 10:22 AM
I love all those definitions.

If you want to know how the Wegs specialists determine remission, here's the BVAS evaluation. Read the first page with instructions and definitions. (Definition of remission is at the bottom). The second link is the actual scale, which you can score yourself.

Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvas.html)

Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvasform.html)

All of your responses help me, especially the quote above. I can't navigate without a few reference points.

Thakator
12-18-2010, 01:35 PM
Yes, thanks Sangye, those are great references.