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Visiting Doctor


Sun, August 17, 2014 10:14 PM

Seeing GI specialist tomorrow after 7 yrs in remission from Crohn's and flaring for one month. Been under care of primary physician who has been consulting with GI and taking Entocort. Had some nice improvement,  but not yet arrested. Am scared to learn what will be my course of treatment and if I will ever enjoy remission like I had for so long. Am always reminded to take things one day at a time. Years ago I was taking 20+ pills a day and then Remicade for 2 years. I loved being pain and med free. Now I fear what's next. I appreciate those of you who have had it so much worse, and it helps me to keep everything in perspective. I also would appreciate your support. I'm a little bit scared.

FPO susanstrong
Joined Aug 17, 2014

Sun, October 12, 2014 12:03 PM

 Reply posted for ria75.

I was on prednisone for 10-11 months during last (first flare), had plenty of side effects, and then went from steroid dependent to refractory Doc says that experience will not impact it's efficacy this time, but I still don't like the side effects.
See primary care doc tomorrow who is managing my care with my gastro. They both are leaning towards putting me on pred.

FPO susanstrong
Joined Aug 17, 2014

Sun, October 12, 2014 11:57 AM

 Reply posted for susanstrong.

Humira has worked well for me, but it takes a couple months to kick in. Sounds like a good strategy with the prednisone just for a short time to tide you over till Humira starts working- hopefully you are not one of those people who have side effects with steroids:)

FPO ria75
Joined Aug 23, 2014

Sun, October 12, 2014 11:13 AM

 Reply posted for ria75.

Was surprised to learn doc's recommendation to go on Humira, long term. This because I failed on other drugs in the past and he didn't want to re-introduce Remicade because of risk of antibodies and dangerous infection. Now I've been on Entocort for more than three months, just had my second loading does of Humira, and am still in a bad flare. Spent to day in the ER last week where they ruled out toxic mega colon and a blockage (phew), and now they want to switch me to hi dose prednisone until the Humira can do its trick. Very reluctant to go on prednisone for a number of reasons, but know I need to get this flare under control.

FPO susanstrong
Joined Aug 17, 2014

Sun, October 12, 2014 12:09 AM

 Reply posted for susanstrong.

How did it go? We all live with the knowledge that crohn's will flare up whenever it wants to:) you need to refocus on a healthy lifestyle and maybe think about supplementing whatever your doc recommends with a good nutritionist. Stay positive- you will be able to get through this round better than the last!

FPO ria75
Joined Aug 23, 2014

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