Is there a person...

[Lightwarrior]

Katarzena,
Someone else in this forum mentioned that people who are active in a disease forum most usually are because they have active disease. Think of the posts you have read from people who have been in remission for years. I agree with Jan, although most of usin this forum are active or at some stage of reaching remission...the prognosis is much more positivel than it was even a few years ago. You are young, strong, intelligent and your amazing spirit reaches out to us across these pages. I look forward to following your progress.

[katarzena]

Thank you very much Lightwarrior I wish you all the best in reaching remission too as soon as possible!
When I've realized it is not THAT bad in reality it got my spirit up a lot.
Thank you =*

[flana]

I have been under the care of a very conservative rheumi... since my dx in April 2009, he has been controlling my meds... 150mg of ctx and 60mg of pred... pred's being tapered every month and I am on 5mg this month, however still on 150mg of ctx. Plans are to introduce Imuran in August and slowly taper the ctx, so as not to add too many variables, should things go down south...

Long story short.. I have been OK with no flare ups, except for when I was driving back home from a trip to Idaho, went into Taco Bell for a normal nose blow due to a minor congestion, and man! it was niagra falls through my left nose! only red in color... was that a flare up? dont really know yet... have to consult my ottolaryngologist...

But I too hope to stay in remission... once a year niagra... I can tolerate that... I sincerely hope for everyone in this forum to stay in remission...

[Doug]

You did the right thing, Raj. Better to spend some time at the doctor finding out everything's OK than to ignore the signs of a flare and live to regret it! Good luck!

[pberggren1]

Raj, was this trip to Idaho just recent?

I hope you have a good ENT as well. Do you have a lot of mucus production in the nose? Do you ahve any crusting or regualr bleeding in the nose?

[Jack]

Ctx should not be used for more than 6 months unless there are exceptional circumstances. It is a highly toxic drug with serious long term side effects and if you are reasonably stable, you should have switched to something a little more benign such as Azathioprine. There is a limit to the amount of ctx you should take during your lifetime so you need to hold some in reserve to cover potential flares.

[flana]

Ctx should not be used for more than 6 months unless there are exceptional circumstances. It is a highly toxic drug with serious long term side effects and if you are reasonably stable, you should have switched to something a little more benign such as Azathioprine. There is a limit to the amount of ctx you should take during your lifetime so you need to hold some in reserve to cover potential flares.

I have heard of this from my secondary rheumi at Stanford as well, when I visited him in March this year. I am not sure if I want to rock the boat at this juncture though. Although we are very cautious. BTW I am supposed to take 150mg, but I self dropped to 100mg. You are right ... per the European regimen I should have been administered ctx for not more than 5-6 months... I am just praying...

[flana]

Raj, was this trip to Idaho just recent?

I hope you have a good ENT as well. Do you have a lot of mucus production in the nose? Do you ahve any crusting or regualr bleeding in the nose?

PBerggren hi, yes I think I do.... No no mucus at all... very dry most of the times... so I use Ayr to keep it moisturized. No crusting either. It was just that one time incidence... Not sure if this might be of any clue but a week later (12th July) after the incidence (5th July - yes it was a very recent trip) I started expectorating Green to Brown colored Phlegm mostly after the Gym around 2pm. Seems like a sign of an infection or Pneumonia??? not sure what that was... but a couple days later thta resolved...

[drz]

I have heard of this from my secondary rheumi at Stanford as well, when I visited him in March this year. I am not sure if I want to rock the boat at this juncture though. Although we are very cautious. BTW I am supposed to take 150mg, but I self dropped to 100mg. You are right ... per the European regimen I should have been administered ctx for not more than 5-6 months... I am just praying...

Initially my rheumatologist said I would be on Cytoxan a minimum of six months. I tried Rituxan first but it didn't work fast enough for me so i ended up on oral Cytoxan as an outpatient. Later on he said I would be on Cytoxan till I gain some control over WG for at least three months, but he also mentioned I wouldn't be on he Cytoxan for more than a year because it was dangerous to take it too long. But so is having WG running around uncontrolled in your body so I think they have to weight risks and benefits for each patient.

[Jack]

If ctx is not working after 6 months, the chances are that either the dose is insufficient or it is the wrong drug for you and you should be considering an alternative. I hesitate to go into the details of long term ctx side effects, I'm sure you are already aware of them. The incidence is already very high even when the use of the drug is restricted so the possibility cannot be dismissed lightly.
The majority of Wegener's patients manage the transition from ctx to Azathioprine without a flare, but the advantage of restricting your intake is that you have the option of returning to its use if things start to go wrong. In my own case, I've already used up my lifetime's dose so I would be in trouble if I had a flare and would have to seek an alternative.