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View Full Version : Medicine free, happy but scared...



chrisTIn@
04-27-2011, 11:27 PM
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 :thumbsup:.

Stil I am a bit scared, or maybe I should say... insecure. :unsure:
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
04-27-2011, 11:31 PM
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
04-27-2011, 11:56 PM
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
04-28-2011, 12:50 AM
Congratulations, that is great news!! :thumbsup::w00t:

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? :wink1:

JanW
04-28-2011, 02:26 AM
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
04-28-2011, 06:38 AM
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
04-28-2011, 07:15 AM
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 :thumbsup:.

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

elephant
04-28-2011, 01:59 PM
That is great news and have you done cart wheels yet?

renidrag
04-28-2011, 08:58 PM
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@
04-29-2011, 07:51 AM
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'? :unsure:

delorisdoe
04-29-2011, 08:15 AM
Lol, this is what we say to suggest to someone should celebrate. Similar to saying "jumping for joy".

chrisTIn@
04-29-2011, 08:22 AM
Oh, I see. Thanks Leigh.
I'll jump around and do a little Weggie dance! :wink1::biggrin1:

chrisTIn@
04-30-2011, 08:32 PM
This is my fourth day without Bactrim (Co-trimoxazole) and Omeprazole.
The only medicine I take now is a supplement called glucosamine.
Allthough scientific studies show different outcomes about the effectiveness of this supplement,
my doctor said it was safe to take.
He recommended it, and said that several patients reported benefits from taking glucosamine.
I know this stuff for years, and I used to take it every once in a while,
but now I 'm gonna take it on a daily basis, and see how my joints will react...

I want to thank everyone on this forum for the help I recieved.
Jack, Sangye, Psyborg, Elephant, Jan, Freaky, Drz, Marta and many, many others (sorry if I forgot anybody)
helped me a great deal with their postings.
I 'll keep on reading here, to see how you guys are doing, and to report every once in a while.
I hope you all will continue feeling as great as possible!

My next appointment with the specialist will be in three months,
also my blood will be checked then.
I surely will report the outcome.
Thanks again for the help so far.

:thumbsup::hug3:Big hug for everyone on this forum. :smile1:

mishb
04-30-2011, 10:02 PM
This has to be one of the best posts I have read all week. I also use glucosamine and think it helps a lot.
Congratulations to you and keep on smiling :biggrin1::thumbsup::biggrin1:

Michelle

pberggren1
05-01-2011, 03:36 AM
I was thinking about glucosamine the other day for some reason. I used to take it years ago when my knees were bothering me but only took it for a short while. It did seem to help my knees.

vdub
05-01-2011, 12:43 PM
Best of luck on your new drug-free status. I really hope it works out.