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What would you do had you been in my shoes?

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Crohn's Disease
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Posted 5/20/2017 1:49 PM (GMT 0)
Things haven't been going on well lately. I have to switch to cortiment which is only absorbed in the colon (96%). But I have been taking entocort (which dissolves only in TI and beginning of colon) for more than 5 years. Convinced my GI to alternate between entocort and cortiment. He reluctantly agreed. So, I started 5 days ago to taper entocort off from 6 mg to 4.5 mg. Now, I 'm flaring up and have abdominal cramps.
These are my current options:
1. continue taking a 6 mg of entocort and forget about cortiment though my proctitis is flaring up and not responding to remicade. Rectal meds failed to put the rectal inflammation under control.
2. take cortiment (and take budesonide away from TI after more than 5 years) which would mean a prospective flare up.
I have become steroid dependent and can't find any other solution.

Can't figure out what to do. What would you do had you been in my shoes? Which med would you take? Which one to neglect. FYI, I'm on Remicade and Imuran as well.
Posted 5/20/2017 2:19 PM (GMT 0)
Oh man, that does sound like a pickle. I'm sorry I don't have any advice confused Is there any possibility the rectal inflammation would respond to a different biologic? That said, if remicade is working for everything but the rectum, I'd be hesitant to switch away from it too.

I don't want to thread-jack but do you mind if I ask you a question? My doctor just prescribed Entocort EC to help me get off prednisone (which is fine with me because prednisone never worked all that well to begin with). She didn't mention how long I'd be on it but it seems like the initial treatment is usually 8 weeks at 9mg and then some period of time at 6mg. Do you have any advice about how long to stay on it? Were you ever able to successfully get off of it in the past?
Posted 5/20/2017 2:38 PM (GMT 0)
Noodlesnoodles, thank you very much.

I have been on 9mg only for a short time. Throughout these years, I have been on the maintenance dose of 6 mg and a lot of times on 3 mg and it was Ok. However, for me, Entocort alone could not put TI inflammation under control. My GI does not understand why I don't want to get off of it since I'm taking Remicade. He said you shouldn't be taking anything else while on Remicade. We only need budesonide for the rectum.

In the pamphlet of the medicine, it says that the maintenance dose is 6 mg for other 8 weeks which has never been the case for me.

Tbh, since I started Entocort in November 2011, I failed to come off of it. The least I can tolerate w/o problems was a 3mg dose. Entocort was initially taken to come off pred, which like you, was ineffective for me. But since I'm steroid-dependent, I stayed on pred for 1 year and 2 months.
Entocort was a life-saver and it kicked in quickly. Up till now, whenever I have a flare up that lasts for weeks, my GI would recommend upping the dose until the flare up passes and then I lower the dose again.
Posted 5/20/2017 6:36 PM (GMT 0)
Ustekinumab + 6MP.

if not, then at least Humira + 6MP.

You need to be able to stop using steroids altogether.

In addition, I'd definitely try Autoimmune Paleo Diet, and drinking bone broth soups regularly.

You can start from here: /www.thepaleomom.com/start-here/the-autoimmune-protocol/

This book has helped me a lot.
Posted 5/24/2017 7:57 AM (GMT 0)
Xy123, thank you very much. Well, I'm still not sure I'd like to try another biologic if I haven't developed antibodies against Remicade and it's effective w my TI. I have tovlook into foods once I get done with this stressful phase in my life.
Take care:/
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