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Prednisone honeymoon phase is over.

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Ulcerative Colitis
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Posted 4/28/2014 1:20 PM (GMT 0)
Well, this Saturday I reduced to 15mg of prednisone per day. I take it all at once in the morning. The past three weeks have been wonderful, no symptoms at all. Only one formed stool per day. Things were so good I didn't bother doing my enemas. Though I haven't done those for awhile actually, probably last one was in March. I've also started the SCD diet on April 12th. My plan is to stick to it for at least a year to see if it helps.

Seems like that good stuff is over. As of yesterday I have blood and diarrhea multiple times per day again. I know it takes awhile for the azathioprine to kick in, I've only been on it for about 6 weeks now. So not sure what to do in the mean time... I don't have an appointment with my GI until June 26th. If things get much worse I will call her but as of now I'm feeling okay. Just a bit disappointed my symptoms are back.
Posted 4/28/2014 5:05 PM (GMT 0)
I would bump the pred back up to 20mgs per day for another month and then resume the taper. Hopefully by your next GI appointment the AZA and diet will kick in for maintenance.
Posted 4/28/2014 5:13 PM (GMT 0)
Hi, I read that azathioprine can take up to 3 months to kick in, so hopefully upping your pred will do the trick.....maybe refilling your enema prescription will help too.
Posted 4/28/2014 10:41 PM (GMT 0)
You think it would be okay to bump up the pred to 20mg for another month??? I wish I could talk to my GI about that, but it may be a good idea.

I started doing my enemas again as of last night and will keep on top of them.
Posted 4/28/2014 11:39 PM (GMT 0)
Yes, use enemas nightly and if your D continues try taking all dairy and sugar out of your SCD diet until your D ceases. These and other SCD foods just didn't work for my gut until I got much, much better. Consider going back to the intro diet of SCD to lower your symptoms. Keep a food journal and see if you can nail what (if any) your trigger foods are.

Just because it's SCD-legal does not mean your gut thinks it's OK. Fruit and juices are big triggers for me although after getting to remission I can eat some fruit now so it's not forever.

It is possible some of your symptoms are IBS (blood is def. UC and enemas are the best thing to use for that.) SCD is not an IBS diet, as I found out by failing with it several times over the years.
Posted 4/29/2014 1:35 AM (GMT 0)
I thought SCD doesn't have sugar. Do you mean sugar containing foods such as fruits?

Yes, I am going to go back to the intro diet. I am going to introduce foods much more slowly this time around.
Posted 4/29/2014 2:34 AM (GMT 0)
Yes all sugar including fructose in fruits and honey too. I found (and this is me and you may be different) that white sugar (small amounts) causes less symptoms than honey and fruit. Do I know why? No. But it is what it is. If you remove fruit and sugar and you still have D then that's not a trigger and now you know that.

SCD yogurt was also a problem for me which is sad because I make it like a genius and looooved eating it.

You need to find out what is causing your D. If you eliminate all possible triggers and nothing helps then you will know food is not your problem and have to then rely on Rx meds.
Posted 4/29/2014 4:42 AM (GMT 0)
Poor thing, the title of this thread struck me because i know the feeling. I feel this way with Uceris even though it's small potatoes compared to pred. I just want off. I think you should try holding steady at 15mg for a few days and see how you're doing. I hate to say it but I wouldn't put too much into the SCD thing. Most people (from what I see here), do not have success with diet, especially people who are struggling with moderate/severe symptoms that require something beyond 5ASAs. When are you supposed to decrease pred again? What's the taper schedule? After 15mg, it gets harder to taper for some people. The imuran should help but it takes time to get into the system. Have you had your levels checked for imuran? I had to taper at 1mg a week when I got to a low dose, even with 6mp. I also responded very slowly to 6mp... Try to stay positive and keep going with your rectals. Are you using cortifoam or rowasa? Soemtimes combo of both is helpful. I have also heard of people combining uceris with pred to get off pred. Wait and see. You may just be having a blip due to the initial taper and things will level out.
Posted 4/29/2014 5:40 PM (GMT 0)
I am on the exact same thing right now, and scared it's going to happen to me too. I've only been on the Imuran since around the first week of April, and right now 35mg of prednisone and will wean by 5mg every Friday. I feel mega anxious on the prednisone too, moods are all over the place. Have to wait until may 8th to see my doctor to see if there is something she can give me because I have anxiety already but right now it's even worse. But until then I'm wondering when I get to a low enough dose of prednisone and I'm not on asacol anymore, will I flare up too? I don't want to be stuck on this hell drug any more than I have to be, and I'm sure you don't want to either! Unless, you don't get the crazy side effects in which case your lucky!
Posted 4/30/2014 12:03 AM (GMT 0)
I can relate with you guys, I was on pred, tapered off, flare came back full force, had to go back to 40 mg due to my symptoms. I'm in the same boat :/ pred is tough :(
Posted 4/30/2014 12:03 AM (GMT 0)
I can relate with you guys, I was on pred, tapered off, flare came back full force, had to go back to 40 mg due to my symptoms. I'm in the same boat :/ pred is tough :(
Posted 4/30/2014 6:05 PM (GMT 0)
Hi, sorry for the late response. I called my GI but she's not in this week so I described my symptoms to the secretary and she will call when she gets back. The secretary advised I go to emergency so I might do that.

As of right now I'm just eating boiled carrots, chicken, fish and eggs. I'm stopping the yogurt and don't eat much honey, just with my tea.

It's very disheartening because on Friday I was fine, one formed stool in the morning. Then all the sudden Saturday it hit me like a ton of bricks. So strange. I think I'm going to stick with the SCD for now, but I can see that my symptoms right now are no different than they were before I started prednisone when I was on a normal diet. But it's only been 2 weeks so I think it's a bit early to give up now.

Also, this morning there was a lot more blood. I hope the enemas will help soon with that, but sometimes I feel like they aggravate my symptoms. I can't tell if they help or not.
Posted 4/30/2014 6:13 PM (GMT 0)
LOL at "honeymoon phase." To me, Pred is like a really bad spouse. He sweeps you off your feet, plies you with good times and great things, then beats you up. And if you leave him, he's gone and won't pay his child support.

Oh, and sometimes he sneaks back a few months or years later and burns down your house.

Hope you feel better soon.
Posted 4/30/2014 6:16 PM (GMT 0)

notsosicklygirl said...
Poor thing, the title of this thread struck me because i know the feeling. I feel this way with Uceris even though it's small potatoes compared to pred. I just want off. I think you should try holding steady at 15mg for a few days and see how you're doing. I hate to say it but I wouldn't put too much into the SCD thing. Most people (from what I see here), do not have success with diet, especially people who are struggling with moderate/severe symptoms that require something beyond 5ASAs. When are you supposed to decrease pred again? What's the taper schedule? After 15mg, it gets harder to taper for some people. The imuran should help but it takes time to get into the system. Have you had your levels checked for imuran? I had to taper at 1mg a week when I got to a low dose, even with 6mp. I also responded very slowly to 6mp... Try to stay positive and keep going with your rectals. Are you using cortifoam or rowasa? Soemtimes combo of both is helpful. I have also heard of people combining uceris with pred to get off pred. Wait and see. You may just be having a blip due to the initial taper and things will level out.

I'm supposed to decrease prednisone again on Saturday. The taper schedule is 5mg per week. I haven't gotten imuran levels checked. TBH I think it just generic azathiorprine im taking because it doesn't say imuran on the bottle. I'm not certain because my dad buys the meds since they're covered by his insurance. I'll ask him. I'm using salofalk enemas, I think that's like rowasa... not sure though. I hope my GI will call me back soon and give me some advice, I'm a bit nervous to try anything without the advice of my GI. I just don't want to mess anything up even more.
Posted 4/30/2014 6:17 PM (GMT 0)

Judy2 said...
LOL at "honeymoon phase." To me, Pred is like a really bad spouse. He sweeps you off your feet, plies you with good times and great things, then beats you up. And if you leave him, he's gone and won't pay his child support.

Oh, and sometimes he sneaks back a few months or years later and burns down your house.

Hope you feel better soon.

Oh god, that sounds awful. I hope he won't burn down my house!!
Posted 4/30/2014 6:31 PM (GMT 0)
My UC acted up when I was trying to taper pred, while waiting for Imuran to work.  I ended up going on Endocort in addition to the pred and Imuran and it really helped and allowed me to taper all the way off prednisone.  I finished tapering off the Endocort two weeks ago. 

Imuran took 4 months before it really started working.  Hang in there!

Posted 4/30/2014 6:35 PM (GMT 0)
I've never heard of Endocort. I'll ask my GI about that.
Posted 4/30/2014 8:50 PM (GMT 0)
Okay, so my GI's secretary called me back. My GI said to increase the prednisone to 30mg for one week then to resume the taper again. Not sure if just one week will be enough. My GI will call me tomorrow, so I'm going to ask her about that.
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