I'm a newbie so I'm concerned

[scottgirl21]

Once you go in the medication. Whatever may help you and go into remission wegs can't spread to lungs, kidneys etc anywhere else right? My doctor thinks to have caught it early so does mean I'm good and won't affect other things?

[mrtmeo]

Hi Scottgirl,
Welcome to the family!
Unfortunately, weg's is not curable, so there is always the possibility that the disease can come back and attack organs.
However, many go into remission for years and some have limited weg's that might not effect an organ.
Flares can be common, so it is crucial to do regular blood work with a knowledgable weg's dr or specialists.
Maybe someone here can post their experience when they were in remission early on in their disease.

[vdub]

Once you go in the medication. Whatever may help you and go into remission wegs can't spread to lungs, kidneys etc anywhere else right? My doctor thinks to have caught it early so does mean I'm good and won't affect other things?

That's really a loaded question and one you should discuss with your doctor since your circumstances are unique.

Wegs isn't like cancer in that it "spreads". I've never actually heard of anyone describe it as spreading. I think it would be more accurate to say that different parts of your body or anyone's body might be more or less susceptible to wegs-like activity. In my case, wegs hasn't affected any parts of my body other than the initial major damage done to my brain and initial minor damage to lungs and sinuses. Once you are in remission, additional damage is usually halted or at least slowed, but the disease is still present.

You might want to discuss the question further with your doctor so you can get a better understanding of how the disease is effecting you specifically.

[Jayne 14]

Welcome Scottgirl21
As the others every case is different
But now you're diagnosed it will certainly help !!



Sent from my iPad using Tapatalk

[renidrag]

I was in remission for over four years, went back on Prednisone last August due only to inflammation levels rising. I am again med free however tested every three months. Everyone is different so, as it was said, talk to your Doctor. I have only lung involvement but do watch creatinine levels very closely.
Dale

[annekat]

We keep hearing that every case is different, and it is so true with this disease. We have heard of many cases on here of Wegs eventually attacking some other part of the body after it has been brought under control in the initially affected areas. With vigilance, regular blood work, and follow-up doc's visits, this may be caught early and nipped in the bud with the meds. And it's not unusual for people to have "flares" while on the road to remission, or after it, with pretty much the same symptoms as they had the first time, but maybe in a milder form if caught early enough. This has happened to me twice, and it took from 2-4 months to get me back to where I was with an adjustment in meds. Now, I'm doing the best ever and may even be in remission, though no one has said so. It is kind of a subjective term, and some docs may use it more freely than others. Even being in remission, you will likely have good and bad days, and if you are still on meds, those will continue to affect how you feel. Tapering prednisone may easily make you feel sicker again, and many people have trouble getting completely off it. You will learn to recognize the signs, to know how your body feels when things are right, and what to look for as signs of a possible flare, such as night sweats and a feverish feeling, joint pain, blood in mucus, etc. Knowing that your doc said your Wegs was caught early, the chances do seem much better that your recovery will last awhile, or indefinitely, without having incurred much damage to the affected areas. Good luck, and remember that avoiding undue stress and maintaining a healthful lifestyle will improve your chances! Do keep us posted.

[whatthewhat]

Welcome to the forum - lots of great info & people here. As far as WG affecting other organs...our daughter was said to be in remission, but actually very quietly the WG was still active. Several months later it was discovered she now had kidney involvement, where before it was "only" skin, nose, sinus, and lungs. I want to throw my voice out there to join in expressing the importance of staying vigilant, and partnering with experienced doctors.

[Jaha]

Welcome to the best knowledge base you will find on the web. There is some one here 24/7 to answer questions you have. You need to write down some questions to ask your Wg specialist about where your involvement is. All the best to you take care of yourself.

[Pierre42]

Wegeners is (in some ways) completely different from cancer.

Cancer is (kinda) like an infection, in that it's (typically) localised (it starts in a particular place) so the concern is not just to remove the cancer you have , but also to stop it spreading.

Wegeners is your own immune system attacking your body, that means "it" (your immune system) is already everywhere.

Which is why WG patients often have "a whole bunch of seemingly unrelated symptoms" (and confused GPs).

As with all incurable diseases "the price of freedom is eternal vigilance", making friends with your local vampire (phlebotomist) is instrumental, and finding a hospital with a solid "frequent flyers program" is a worthy goal.