6MP? Remicade? Prednisone? Confused

[Florida]

:confused2:
I was diagnosed with Crohn's Disease seven years ago, and apart from an insignificant flare up every two years ( Entocort for a week and it's gone ), Crohn's Disease has left me rather unscathed. However, this time I procrastinated going in to see my GI because I was sure that I wasn't having a flare-up and simply had to adjust my diet to alleviate my impending Crohn's symptoms. Pretty much, I tried to convince myself that it was too soon for another flare up. I was wrong. So it turns out I have a Phlagmon (spelling? ) and micro-perforations.

I've been in the hospital for two weeks on IV Flagyl and Zosyn ( &TPN ) and so far they've been working okay. My GI, however, wants to put me on another medicine to combat the Crohn's while the two previously listed work on the Phlagmon (again, I have no clue how to spell it).

So far 6MP, Remicade, and Prednisone have been discussed. To tell the truth, I'm afraid of every one of them! Remicade has a history of causing T-Cell Lymphomic cancer in youths, and seeing as I'm 14, I have more than a few reasons to justify freaking out. I haven't heard that great of reveries of 6MP either. I just wanted to know if you guys would explain your experiences with any of those three drugs. Did you like them? Did they work? Side effects?

Other than the Phlagmon all my clinical symptoms have vanished. I haven't had a cramp or fever in two weeks! I have never had bloody stools or any symptoms other than a high fever and stomach cramps ;_;

All in all; I'm just overwhelmed. So, you guy's opinions would help a lot, because my GI has pretty much left the decision of what to do up to me. ;_;

 

[Trysha]

Hello Florida
Welcome to the forum.
This is a good place for information and support
Your spelling is not too bad but I think the word may be Phlegmon .
It is surprising that you have to make your own decision regarding treatment, do you have no relatives or parents to help and support you?
Crohn's is an insidious disease and can be silently causing lots of trouble , so absence
of symptoms does not mean it has gone away.
With the complications you are having a good approach would be Remicade, which can work very quickly, sometimes within 24 hours to quench the Crohn's its a good option.
It is worrying to look at side effects and think it will happen to us but it really is a very small percentage that get affected.
There is lots of monitoring while taking remicade.
You might like to look at the Remicade sub forum on here, and also the children's section.
for further information.
I agree it can be a difficult decision to make and one that I have just made and not without trepidation .. Like you my symptoms are currently minimal but I know that can change abruptly and does.
My remicade will be starting next week.
We will all be interested to see how you make out, so do keep in touch with us.
Feel better soon
Hugs and best wishes
Trysha

 

[Hope345]

florida,
Welcome to this forum. you will find so many helpful people and lots of information available to you.
My daughter is also 14 and was diagnosed last year.
I am glad your Crohns seems to be under control. Do your lab tests also show that you have no inflammation?
The doctors can look at your labs and tell if you need to take further meds. If you are sure that you have no inflammation, there would be no need to add meds. Since they are talking about Prednisone, Remicade and 6MP, I am guessing your Crohns might still be flaring even though you feel no symptoms.

B had to be treated right away with Prednisone to get her inflammation under control. Since her Crohns is in her colon, she bleeds alot and is always anemic.
the GI put her on the 6MP, but after 2-3 months of no response, she was put on another dose of Prednisone and then finally Remicade. After 6 treatments, she seems to be in remission.
some people respond to the Flagyl, and do not need to continue with additional meds. Most insurances require that you try everything before Remicade can be used. B has had no side effects from the Remicade, but we hope to get her off of it someday.
It is all a process, and it takes time.
I hope you are responding well enough to the current meds that you may not need to take any further ones. however, they may have you on a short term steroid that may have taken care of your symptoms short term.
I know it is scary, but the medications can be so effective if they are necessary.

take care and let me know if I can answer any questions for you
I wish you all the best.

 

[Manzyb]

Hi Florida!

If this helps at all, I was 15 when I began taking remicade and I took it until I was 21. I know the potential risks can seem scary, but they are very slim chances. I took remicade for a long time with no side effects.

I hope you find your answers! It is all so scary being so young and dealing with these issues.

 

[hawkeye]

I started Imuran (6-MP's parent drug) when I was 18 (7ish) months after being diagnosed and have been on it since then. I credit it to keeping my Crohn's relatively under control for the past 22 years. Had a few flares that required prednisone though over the course of the past 22 years.