Medicine free, happy but scared...

[chrisTIn@]

Yesterday I saw the professor that has treated me now since august 2010 (not the one who diagnosed me first).
I am very happy, because he allowed me to stop taking co-trimoxazole (Bactrim).
Since June of last year I have been on Bactrim (2x 960 mg. daily) and Omeprazol, so that is almost a year now...
He told me he has fifty patients only on Bactrim (other patients use the heavier Wegener's stuff, the kind of medication that many of you know...). From that fifty patients only two are allowed to stop. I am one of them .

Stil I am a bit scared, or maybe I should say... insecure.
What will the future bring?
When will I have a flare-up again?

My doctor, who is famous in his field, monitored me closely for the last seven months, with extensive bloodwork. He says, that since I haven't developed any major organ involvement in this period, the chances are good for me to maintain remission, even medicine-free.
I sure hope he's right about that. I 'll keep rinsing my nose, and live as healthy as possible.

Is there anybody here with medicine-free remission?

Do any of you have advice for me, what signs of 'flaring GPA/Wegener's' (-or-whatever-it will be called in the future), I should pay special attention to?

[delorisdoe]

I was for many years and then only started having the odd small flare here and there treated by prednisone. You probably never will be able to 100% know the difference between a cold and wg...i dont.
leigh

[gurinbasra]

Hi chrisTIn, great news on coming off the drugs! It's always a good feeling to be drug free. If you're not on any immunosuppressants, perhaps coming off the Bactrim is good as you have a normal immune system. I've been on Bactrium since I was diagnosed in 2007 and take it 3x/week and was told that because I have "limited WG", this is a specific ENT antibiotic so taking it always is beneficial to me. Plus I'm on Mtx and am into month 3 after Rtx so I find the Bactrim helps - actually, to date, I've never had any ENT type infections - only infected ears which was a result of a big WG relapse in 2009.

Enjoy this time of good health, don't fret over what lies ahead, if it's gonna flare, it's gonna flare. I've always experienced that whenever something goes wrong and it just gets worse and worse, then it's a flare and nothing but. Sometimes good news is exactly what it is - good news so live it up - but keep up-to-date with blood work and those issues that just get worse.

[Sangye]

Congratulations, that is great news!!

I agree with Gurinder-- just enjoy the present and don't lose precious time and energy worrying about the future. "Seize the day," you know?

[JanW]

Agreed and congratulations of your med-free existence. There are many docs who prefer to keep patients on drugs the rest of your life, but, increasingly the professional seem to be saying that patients should try to give med free a shot. I am working on that right now.

[Jack]

Fantastic news!

My advice - enjoy your life and try not to worry too much about what may or may not cause you problems. If that information was available, your doctor would have told you.

[freakyschizogirl]

He told me he has fifty patients only on Bactrim (other patients use the heavier Wegener's stuff, the kind of medication that many of you know...). From that fifty patients only two are allowed to stop. I am one of them .

Those odds are frightening, but happy for you and fingers crossed you get your drug free remission! x

[elephant]

That is great news and have you done cart wheels yet?

[renidrag]

Congratulations, I too am drug free remission since June 2010 with no real side effects or a flare. I am not sure I would recognize one but I keep an eye on myself. I still get tired, and cannot work but try to enjoy the new normal I have. Enjoy and keep us posted as to how you are doing.
Dale

[chrisTIn@]

Thank you all for your good wishes. I 'll keep an eye on myself for sure, and enjoy this medicine-free period for as long as it lasts.
Elephant, must be because I 'm not a native English spreaker...
...what the hack do you mean by "have you done cart wheels yet'?