Is there a person...

[katarzena]

...that didn't get a flare up during treatment? Is that possible?

[Jack]

As I understand it, there is about a 50% chance of a flare occurring after successful treatment although many remain in remission for long periods. Most people on the site are those with ongoing problems caused by the disease so you tend to get a false impression. :)

[elephant]

I thought I saw someone on here who was in remission for 30 years. Like to know if he did anything that kept him in remission that long.

[JanW]

My doc's understanding is the same as Jack -- you are just as likely to never flare again once they get your initial flare under control as you are the flare again, even dozens of years later.

[pberggren1]

I flared while I was on Cellcept in June of 2008.

[Sangye]

Yes, Katarzena. One of our members (Mike Caven) went straight into remission with his initial treatment, and was off all drugs for about 27 years. He felt great during that time. Last year he flared again, did the same treatment (ctx/pred I think) and within a few months was in remission again. I don't think we've heard from him since, so I assume in another 27 years we will. :D

[elephant]

Hey good for you Mike Caven....need to let us know how you stayed in remission!

[katarzena]

That is great to hear. Wish there were more positive stories on forum though... :)

[JanW]

I think that there are lots of positive stories on this forum. For one thing, most of us have read that until the late 1970s the time from dx to death with WG was averaging 6 months. SIX MONTHS! Now there are many, many people who live with WG, work, raise families, GET PREGNANT after having WG and have children...essentially all of the normal things of life. That really wasn't possible before the combination of chemo and pred was shown to be effective in this disease. Those of us who live for 30 or 40 years after dx (and I am assuming that I will be one) will not suffer many of the effects of those who came before us because drugs are better understood. So, although many people get very sick with WG, the overall story is still a positive one.

[katarzena]

Have to agree on that one with you Jan.
I believe that people that will get diagnosed in next decade or so will have a treatment even better the ours.

[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.

[Sangye]

BTW I am supposed to take 150mg, but I self dropped to 100mg.
Raj, please don't do that with your drugs! The doses are standard to achieve results. If you take too low a dose, you might just be prolonging the time you spend on it and/or pred. Also, it can't control the disease as well and you can develop silent damage while you think you're getting better.

Most importantly, you have to let your doctor know exactly what you're doing. S/he is basing decisions on what s/he thinks you're taking. So if your blood work doesn't look as good as they expected on 150mg imuran, they may think it doesn't work for you. Or any number of other scenarios.

There have been times that Dr Seo wanted me on a slightly higher dose of pred and I told him I'd start low and work my way up. He's fine with that and makes sure I understand if there are risks. I'm always 100% up front with him about what I'm taking.

[Jack]

I agree with Sangye.
If I do not agree with the proposed medication, I discuss it with my docs and we come to an agreement. If I change my dose between visits for any reason then I let them know what I have done.
Ctx is far too dangerous a drug to be changing dose without consultation and follow up testing.

[JanW]

I agree with Jack and Sangye. WG is nothing to mess with and neither are these drugs! You really have to let you doc know what you are doing at every step of the way. For instance, in my case, when my liver enzymes started to spike on a very low dose of mtx, if I hadn't talked to my doctor about what he meant my moderate drinking and what I meant by moderate drinking (two very different things), he would have thought I couldn't tolerate mtx and put me on another drug. As it stands I radically cut back on drinking (I was a daily wine drinker) and the problem resolved completely.

[DEE]

[QUOTE=JanW;20763]I agree with Jack and Sangye. WG is nothing to mess with and neither are these drugs!
ive been using oral Ctx for nine months due to the fact its the only thing that is keeping me stable at the moment, but im starting to tapper from 150mg daily to125mg daily over the next month when they hopefully will add Imuran and continue to tapper Ctx with weekly bloods and consults with wg consultant
they expect the cxt tapper to be a slow process
i know we are all different but they kept repeating how important it is to tapper slowly after been on cxt for so long
im tappering preds at the same time 22.5 mg down to 20mg this week started to get more joint pain and headaches back but will keep an eye on these things . i know im desperate to get off some of these drugs but i wont do anything silly like ignore symptoms :) done that before and got in a mess
see i do listen to you all DEEx

[Doug]

Even if you have MD after your name, you should follow your doctor's orders, and, certainly, discuss any thoughts you have on how you are responding to a medication.

I had one spell where I felt "drugged". When I mentioned it to my doctor, he reduced dosage on the drug concerned, experimentally, and asked me to track how I felt in consequence. Ultimately, my dosage was dropped on the drug after my doctor was able to verify it was at an efficacious level still, and I didn't have the "drugged" feeling.

It was one where dosage was based on weight, and my weight was in that state where it fluctuated wildly because of GI issues. I'd dropped into a new weight range for the drug, but just barely, yet it was sufficient to leave me over-drugged on the old dosage.

[elephant]

I am honest with my doctors and they respect me if I don't want to take a prescribed medicine ( not for wegs) because of the side effects, but I do take all the Weg medicines and I am very compliant.

[pberggren1]

My new Wegs doc told me that most docs don't give a high enough dose of ctx to knock the Wegs out early.