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Ulcerative Colitis
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Posted 12/5/2014 8:18 PM (GMT 0)
Whats up guys? I'm just super frustrated right now and need to vent...

I'm currently still in a flare (maybe 6 months?) and just cannot pull out of it. I'm taking simponi shots every 2 weeks instead of once a month also on 100mg of 6mp. I just weened off pred about 2-3 weeks a go and have been on hydro cort enemas for 2 weeks now. I've been on simponi for 4 months and it doesnt look like its going to work. I'm just tired of being sick all the time! I was always very healthy and active and this is killing me. Don't have the energy to exercise or do anything. I have to work because I own a business and that takes any energy I do have.

Sorry to complain but Im just super frustrated! I know what the next step is, its move to another biologic and hope that works. My disease is not super severe its just constantly active. I know you guys understand....

I own a little post office so this time of year is super busy and I'm thinking about going back on pred just to get through the season. I'm sure the doc is gonna want me to do another scope before we switch medications but the pred will just get me through this month until I can do the scope. Just to busy right now.
Posted 12/5/2014 9:17 PM (GMT 0)
  I'm right there with you.   I am also in flare; going on 4 months now. Been on 40mg prednisone for 2-3months now. Prednisone used to work like a charm, this time it has done very little. I’ve been struggling between Dr and ins to get other medications (Lialda, Rowasa, and Canasa) to be approved by ins, etc. I have been waiting for a week for the Dr to submit the form to ins for the Rowasa and Canasa to be approved. I called today, and it still hasn’t been done. Needless to say I am furious, as my status keeps getting worse by the day.   I wish it weren’t so difficult to get the meds we believe will help us, and to know what those meds are, and also frustrating when the meds we think work stop working.   Wishing you the best.
Posted 12/5/2014 9:26 PM (GMT 0)
Hi UC, this is my 3rd month in a flare and I'm tired of it. I've been on Lialda for about a year and Asacol for quite a while before that. Entocort was added 4 weeks ago. My Dr. is talking about trying 6mp next and I'm nervous about the side effects. I have zero energy and am super busy at work and at home. Wishing us all the best!
Posted 12/5/2014 9:52 PM (GMT 0)
Simponi never worked for me, neither did Humira but they were more convenient since I didn't need to get an infusion. Remicade worked great for me for almost 5 years. You might want to try Remicade if you haven't tried it all ready. Or Entyvio.

I'd give up on Simponi if it hasn't helped you in 4 months.
Posted 12/5/2014 10:30 PM (GMT 0)
Might want to think pre-emptively and go on pred every year at this time to get you through the busy season.
Posted 12/5/2014 10:39 PM (GMT 0)
Thanks for your replies...spoke to my GI and he told me to go back on 20mg of pred and I have an appointment next Thursday. He did mention remicade.

Thanks Again
Posted 12/5/2014 11:19 PM (GMT 0)
Hey there,

I've been where you are.

Aside from the medication angle on things, stress needs to be addressed before you can see progress. That's what I've found.

After that, going on a low inflammatory + low residual diet and taking probiotics helps. I'm also a fan of cortifoam to help pull through flares, treating things at the source.

Hang in there!
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