How is remission different from active disease??

[snooz23]

I know this has been talked about many times yet I am still wondering about the state of remission. Do people generally feel 50%, 75%, 100% better during these times? I know we have to find the new us but what is the difference in the new you in remission vs. active disease? How is it different from what we are left w/ after dx?

[jola57]

I think that you know that you are in remission when:

Your blood tests are all OK
You feel fine
No pain anywhere
Kidneys, lungs, liver, eyes, nose, ears, are all functioning normally

This is how I understand remission. 100% better

[Jack]

I'm not sure I would go as far as saying that it was when you feel 100% better. I consider that I've been in remission for at least the past 15 years, but I've still had lots of troubles. I use the term Remission because for most of that time I have been able to function reasonably well - hold down a job, raise a family, and my blood tests have been stable although not what you would call Normal. Neither have I had any return of the early symptoms of sinus problems, arthritis and skin eruptions. Taking lots of pills, getting a few infections and steroid side effects became my New Normal.

[elephant]

I am still trying to figure that out. I know that I am not in remission...still sinus and ear issues, but no swollen or painful joints. My poor husband is so sick of me being sick. I can't blame him. We have two small children and no family down here. So it makes it very stressfull on all of us. I will throw a big party when I go into remisson!

[andrew]

I think 'remission' can probably be defined as a lack of presence of the disease over a period of time. That means that your bloods are normal..well...weggie-normal anyway. Problems that occur because of the wegs such as saddle-nose, scarring, dicky kidneys and more are all a result of the disease but don't necessarily mean that the disease is active. Kind of collateral damage :-) Many people on the other hand feel fine when they're in remission it just depends on how the disease had affected the body. Dunno if that's clear or just raises more questions :-)

[JanW]

I would imagine though, that you could still be having drug side effects, (and still be on drugs) and technically be in remission, so it will be different for all of us. My doc doesn't like to speak about remission at all, saying that it's "semantics." For some of us, I'd imagine we would also be feeling fine and have active disease (e.g. pre-diagnosis). I was feeling great as my nose was saddling, for instance, and went to the rheumotologist for a problem that was unrelated to my primary areas of disease -- my ankle.

[Sangye]

Andrew raises a good point about "collateral damage." Sometimes it's actual damage and sometimes it's side effects from the meds that you have to stay on. Basically it's the stuff you're stuck with.

Many chronic symptoms can cloud the clinical picture and make it hard to tell if your Wegs is active or in remission. My Wegs doc attributed many of my symptoms last spring to collateral damage but it turned out it was a flare. Neither of us has any idea of what I'll be like when I do get to remission-- ie, which of my current signs/symptoms are due to active Wegs and which are collateral damage, and to what degree? Is this incredible fatigue going to continue? Will it be 20% better? 60% better? No idea whatsoever.

You can't buy this kind of excitement. :D

[jola57]

Jack, when I remember how I felt when I went to my rheumy the first time, I feel 1000% (if there is such a thing) better. I was one sorry human being back then. So if there is a remission its the state between the flares when there is a calm before the storm.

[snooz23]

Thanks for the replies. And once again seems like the bottom line is everyone is different. I go to Cleveland next week to follow up w/ the bronch. results and possible treatment changes, so I am also going to ask the question of Dr. Langford and like most of the time I am sure her response will be sympathetic yet truthful and will include everyone is different and there is really not a concrete answer. I guess for my own sanity I am going to continue to believe that this is not remission and somehow, someway the discomforts I feel everyday, all day will diminish.

[elephant]

Snooz, so glad your going. You will feel better. You are in good hands with Dr Langford and you have some great WG specialist there. She will get you to remission, and sometimes those meds are trial and error, but one of them will be a perfect fit. You are blessed that your so close....

[Lightwarrior]

Andrew "You can't buy this kind of excitement. :D

Funny, Sangye, wish we could buy it...because then we could return it for a full refund (lol)

[Sangye]

Rotfl... :D

[Pierrette]

You can't buy this kind of excitement. :D - Sangye - I loved that.
Perhaps you will enjoy this: Life is tough and it is even tougher when you are stupid. - John Wayne
I try not to be stupid but God help us all, this Weg stuff and getting a handle on it is really taxing me. Thank you again for being so candid. Pierrette

[elephant]

Pierrette, I know it is a full time job trying to manage this Wegener's. I take it one hour a day, sometimes one minute a day.....it will get better...try to accomplish something everyday....for example call the ENT WEG doc and set up appointment....Write a list...Glad you are here. :)

[Sangye]

Oh, Elephant, I'm SO proud of how subtle that nag was.... :D

[Sangye]

You can't buy this kind of excitement. :D - Sangye - I loved that.
Perhaps you will enjoy this: Life is tough and it is even tougher when you are stupid. - John Wayne
I try not to be stupid but God help us all, this Weg stuff and getting a handle on it is really taxing me. Thank you again for being so candid. Pierrette
Well let me just say for the record that my life can get REALLY tough.... :D

Elephant is right. Just hang in there. Wegs is a rollercoaster. It's a steep learning curve in the beginning, but you have lots of help on here. It's difficult transforming your life into one that involves constant docs and drugs. It gets easier.

[Mike]

Good luck, I am sure you will have that big party soon.

Traceys Dad