Dumb Doctors

[PixieGirl]

I've been on prednisone for a few weeks now.
I had a great appetite (for once), I had gained a few pounds (which was needed), and my flare was mild (but still there).
I was feeling good for a few days. One of those days happened to be the day I went to see the GI doctor.
My doctor just assumed that since I had been feeling good for a few days, then I most be in good enough condition to get off prednisone and go back to 6mp.
As soon as the dose went down, so did my appetite, my weight and my flare returned. The only thing that stayed the same was my stupid prednisone fat face, which looks weird on a girl with a body as skinny as a toothpick.
I'm still on prednisone, but still taking the dose down. :depressed:

 

[tzvia]

PixieGirl,
How are you feeling now? Pred can be a wonderful drug because it knocks out inflammation fast and it does increase appetite a lot, but it's dangerous to be on for the long-term. So I'm assuming that's why your Dr wanted you to lower the dose after a few weeks. It sucks that when you lowered the dose your flare came back! Did you tell your Dr about it? The "fat face" will go away eventually once you manage to get off the pred! How is the 6MP working for you now? How are you doing?

 

[PixieGirl]

I'm not doing the greatest. I've gone to the hospital three times since October, maybe four.
6mp is doing okay, but I wish it would do better.
The fat face is starting to go away now that I'm off prednisone.

 

[ronroush7]

Hope you feel better soon, Pixie

 

[tzvia]

PixieGirl,
do you notice anything that helps? Like certain foods or things like that? Is there anything you have found that helps?

 

[PixieGirl]

There are a few things that help a little.

 

[ronroush7]

PixieGirl, what are some of the things that are helping?

 

[PixieGirl]

Soft foods, no vegetables, rubbing peppermint oil on my tummy or putting a heating pad on my tummy, avoiding to much junk food. Things like that. But they don't help as much as I wished they did, and they are the few things that help.

 

[PixieGirl]

PixieGirl,
How are you feeling now? Pred can be a wonderful drug because it knocks out inflammation fast and it does increase appetite a lot, but it's dangerous to be on for the long-term. So I'm assuming that's why your Dr wanted you to lower the dose after a few weeks. It sucks that when you lowered the dose your flare came back! Did you tell your Dr about it? The "fat face" will go away eventually once you manage to get off the pred! How is the 6MP working for you now? How are you doing?

6MP could do better. I could be better.

 

[PixieGirl]

One of my doctors told me that IBS stands for I Be Stupid, meaning that the doctor is to stupid to figure out what's wrong with you.

 

[Jennifer]

It's nice to have a GI with a sense of humor.

6MP can take up to 6 months to get into a therapeutic range so maybe you were taken off the steroid a little soon. Depending on your disease location I wonder if you could take Entocort (fewer side effects than Prednisone, some of us didn't have any side effects myself included, but mainly works in the terminal ileum and the ascending colon) for now until 6MP starts working. If the 6MP doesn't do enough after a while then maybe adding Allopurinol to it might help you get into a therapeutic range.

.

 

[emmaaaargh]

I agree with Jennifer - 6MP and azathioprine take a long time to start working and it's way too common for GIs to have their patients wean off their course of steroids too early, so it's not bridging the gap until the long-term meds start working. I was on azathioprine (and off prednisone) for about 9 months before it started to work for me!

Hope you're doing okay, PixieGirl

 

[PixieGirl]

I think 6mp doesn't work any more. I used it for three years, but now it's like my crohn's is getting immune to it.

 

[ev_read]

Same thing happened with my Remicade. I left it four years ago (about that timeframe) and just came back to it last year, now I'm barely hanging on with a colostomy and Remicade combo. Your doctor might switch you to humira or Remicade soon, since your body is building a tolerance to it.