Flare/remission question

[snooz23]

Since my dx in Sept. these terms have remained very elusive to me so I thought I would ask some of the experts. It is a truly so confusing to me. Is it possible to remain on more or less the same drug plan and have flares that come and go throughout the week? Maybe one or two days you are feeling like you start back at ground zero and the other days you feel better, not great, just better. And then the other thing I cannot quite understand is what will a remission feel like. Should I be 100% symptom free because I can hardly believe that will ever happen. Like I always tell my doctors, it's not that I feel better necessarily just different. Meaning yes maybe I'm not in as much pain, but I have all these other issues that add up to being in pretty much the same position.

I also realize a lot of this questioning may be so soon to be considering. I have seen some posts where remission is achieved rather quickly while others take much, much long and often struggle w/ actually achieving any kind of remission.

I guess what I am asking is how do you describe a remission and flare for yourself my fellow weggies?

[Doug]

A remission is an absence of symptoms that is verified by medical tests.

Since WG mimics so many other things, you may be in remission but have symptoms that aren't actually WG. It's complicated! We tend to use the "feel good" standard on this site because it is possbile to feel pretty good yet still have measureables that are in the active flare range.

I don't know if a person ever achieves a symptom-free state, but anyone who's been in remission can state they feel reasonably well for a change. I am in remission yet I still experience peripheral neurapathy. Other WG symptoms seem to appear from time to time, but I have those checked by my doctor if they persist. So far, they have been false positives.

We speak of the "new normal" from time to time on this site. That is a state of health that may not be as good as what you felt before you became a weggie, but that is a stable, reasonably symptom-free state you and your doctor feel is remission, in one definition.

Another "new normal" state might be where your symptoms are in a stable zone that suggests you are headed toward a state of remission, but that haven't yet lasted long enough or decreased far enough to call "in remission". Typically, you are still on Cellcept or some other drug post Cytoxan and Prednisone (or whatever you started on), but feel pretty good if not back to a state where you feel like running a footrace just yet.

I hope that gives you some sense of it.

[Jack]

Doug gives a pretty good description.

I consider remission to be a stable state maintained without having to take the most toxic of the control drugs. Most Wegener's symptoms should be minor and easy to live with. The daily ups and downs you describe are just part of the normal active Wegener's symptoms and not mini flares. A true flare will require increased medication and may take some time to bring under control.

In my own case, I consider myself to be in remission. My Wegener's has been pretty well inactive for years although this state is only maintained while I take lots of pills. That is not to say that I feel fine and have no symptoms. Just the opposite! 25 years of toxic drugs have made a real mess of me and I'm now paying for the good years they bought.

[elephant]

Another thing to consider is sometimes Wegeners does damage to the body and we end up with medical complications because of it. I have severe damage to my left maxillary, also had a kidney transplant, lung nodule removed so I wonder is it the Wegeners coming back? Or is it a cold? Or is it a sinus infection? ?? I already had 4 maxillary surgeries in the last 18 months. Last surgery was Sept 2009. So it can be confusing. So I just go by other symptoms ( short of breath, swollen joints/pain, fever, lethargic). So we always have to be on top of our symptoms and let the doctor know what's going on. It's like having a second job trying to manage our care.

[Sangye]

Boy, these were all great answers!

I only have one thing to add. I've heard about poker players having a "tell"--a facial expression, body movement, etc... that reveals when they have a good hand.

I know my body's "tells" for Wegs: My ankles swell more than usual. I have a profound sense of fatigue. I'm extremely restless at night-- writhing, even when awake-- and have insomnia. Night sweats.

When these start showing up, I know it's Wegs and not something else. They show up WAY before blood work shows anything, and way before more typical symptoms appear (eg, cough).

[snooz23]

Thank you so much for all the insightful replies. It is so interesting to hear from those that have years experience in this never-ending balancing act. I appreciate all the reponses.

It is just so hard to get used to the fact that I always feel like something is coming on...it doesn't quite take me out completely but it is just hoverings overhead...my chest is tight, I'm short of breath, I have pressure in the face, of course my ears are always ringing, I'm just achy and not feeling right BUT I can still function fairly normal--take care of my kids for the most part, go to work a bit and just function. Then I begin to freak out because I say oh no I'm not paying enough attention to this and I could be headed towards some kind of huge explosion....eeeeck run, run, run.

Well, I will just appreciate today for what is in and know I can probably expect something different tomorrow and everyday thereafter....I guess that is really life anyway, huh?

[Jack]

Wegener's can often be a real roller coaster ride with symptoms coming and going all the time. Sometimes it can take years for a symptom to clear, I know that I have had many that I've now forgotten about, only to be replaced by others. Sometimes there may be a big gap with hardly any problems at all!

[Doug]

Gad! We should publish this "page"! So many really good responses. It just goes to show how complex remission is, and how confusing it has to be to people just getting there, or hoping to.

[coffeelover]

I have been on the 'verge" of remission for quite some time now, but not quite there. This is frustrating. I am going to see a Weg specialist in the next two weeks and maybe he can shed some light on it for me. One day I feel like I am doing great, the next day I am wondering if I am getting worse. Each day brings new challenges and questions, but each day I am thankful that I feel as good as I do. I still spend some days wishing I did not have this disease, but for the most part my outlook is positive and I have come to appreciate more of the little things.

As some of you know I run a hotel and sometimes people complain about the smallest, most insignifacant things and I think to myself "they should be thankful, they donot have wegs!" .

Lisa coffeelover

[elephant]

Hi coffeelover, I love coffee too. I am so glad you are seeing a Weg specialist. This disease can be so confusing, like I said before. What's you favorite coffee brand? My favorite is Starbucks and Dunkin Doughnuts. Love the smell of coffee Morning ,noon and night.