Question about flare ups

[katarzena]

I havent had one but I wonder how often does it happen? And what does the treatment look like after you get the flare up (after you've been in a remission for years) Do you have to go through the whole chemotherapy again?

[Col 23]

Hi Kat
All I know is they, the docs tend to up the Pred and tweak medication when your having a flare. It is obviously individual as to how many times people have flares and it appears one fo the main causes is tapering Pred too fast.
cheers Col 23

[pberggren1]

Wegs is such an unpredictalbe disease. Flare ups are different for everyone. It all depends on your case and history of involvement in drug use as to which drugs your doc will want to use. It is a good thing to get a Wegs Specialist involved as early as possible - meaning now. I have had 3 flare ups and used the ctx all 3 times. I may be having my 4th flare up now. The disease can change over time as to how in is going to rear its ugly head again. Some people have been in remission for 20 to 30 years. And then other people have been diagnosed 10 to 20 years ago and still haven't achieved remission. These are the rare cases I think. Just try to keep a positive attitude and deal with one thing at a time. That is difficult to do because of the all the complications due to the disease itself and then the medications as well causing nasty side effects. You can find much information and comfort from this site. I think I would lose my mind or go into a depression if I couldn't log onto this site regularly everyday as I am now.

[Jack]

I think that around 50% of Wegs patients in remission go on to have a relapse. The treatment then depends very much on how far it has gone before being recognised. I have had several flares and sometimes had to return to Cyclophosphamide, but on other occasions have got away with increased steroids.

[elephant]

Kat, I had this disease for over 30 years ( that is what the doctors think), I was diagnosed 2008. I had small flares in the last 18 years, but didn't know it. I have permanment damage from just having the small flares. I think I am going to be on medicine for the rest of my life to stay in remission.

[ballfolife23]

I was diagnosed with wegs end of 2006 and pretty much started being normal in july/august of 2007 and everything went down hill this febuary of 2010.


Don't mean to bump an old thread but its beats making a new one...My question is that how can you prevent yourself from getting a flare up?!?!...I mean i dont smoke i dont drink my eating habit isn't the best...but its gotten much better..

I just hate to be living like this for the rest of my life..

[elephant]

Ballolife23, you will have your good days and bad days even in remission. But it will get better, right now it just feels like it won't ever go away. Do you have a Weg specialist, if you do they are up to date on research and medicines.

[JanW]

This is the great unknown question, Ballfolife23. The researchers at the conference are coming around to the idea that it's much more random than previously thought and that in fact some of the medications we stay on to remain in remission might not be doing that -- in other words, those people would have remained in remission without the added drugs.

Right now people haven't discovered anything that you can do to go into a permanent remission, just like they haven't discovered what causes WG in the first place.

[elephant]

This disease makes you feel like your walking on eggs shells. Yes you have to live your life, but in the back of most of our minds is the "would if!":huh::w00t:

[Jack]

About the only thing you can do is watch for symptoms, have regular blood tests and react quickly if it all starts to go wrong. That way you might get away with an adjustment of your current meds instead of something more drastic.

[drz]

About the only thing you can do is watch for symptoms, have regular blood tests and react quickly if it all starts to go wrong. That way you might get away with an adjustment of your current meds instead of something more drastic.


How often do you have blood tests?

[Jack]

I have bloods taken every three months, but I have been stable for many years now. As soon as I experience any Wegener's like symptoms I can just call into the clinic and do not have to wait or make an appointment.