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Stopped Prednisone, but feeling crappy

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Ulcerative Colitis
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Posted 12/10/2015 4:33 PM (GMT 0)
Hi all,

I know there's lots of Prednisone threads out there, but couldn't find an answer to what I was experiencing so I'm hoping someone has some advice. As a side note, my maintenance meds are Lialda (4x) and Azathioprine (150mg).

I just stopped taking Prednisone a week and a half ago after being on it since January. For the last 10mg, I have tapered 1mg/day. Overall, I've been ok (sometimes great) but there have been some really rough days (stomach pains, more than usual BMs). I've used Imodium in small doses, which seems to have helped.

Since I've stopped, I've experienced days where I feel just fine or I am sick to my stomach. When I am not fine, my stomach hurts and I have intense gas pains. My BMs are fine (solid, 2-3x day, no blood) but sometimes I get a sense or urgency only to find it's just really bad gas.

My question...is what I'm feeling still the result of stopping Prednisone? I have read where people can experience intense stomach pain and I feel that's what I have but I am worried that it's something else. I have contemplated taking an Imodium to "slow things down" so my body can adjust but didn't want to get too hooked on it (plus I don't have any signs of diarrhea). I also have several of the other symptoms of stopping including extreme fatigue and feeling achy.

Thanks in advance.
Posted 12/10/2015 5:13 PM (GMT 0)
Do you think you might have too much acid in your stomach? My GI put me on omeprazole to help reduce acid that was causing stomach pains and nausea. It got really bad when coming off pred. I found it helped a little but it takes a few days to build up in your system. I also took spoonfuls of aloe vera gel to calm the acid. (Don't do this if you are experiencing Diarrhea)

The fatigue can be caused by your adrenal glands trying to catch up. I take something called Adrenal Fatigue to help things along. I also find Licorice Tea helps. But be careful with licorice because it also raises blood pressure and depletes potassium.

I know it sucks but this will pass.
Posted 12/10/2015 5:20 PM (GMT 0)
Doesn't sound like this is caused by the Prednisone stopping. I've done very slow tapers several times, like you did (doing it now on fact at 1mg/day under 10).

Sounds like it's something else. Are your maintenance drugs working? Perhaps your diet is contributing to this? May be helpful to go back to basics with some simple food - perhaps bone broth & add from there?

Hope you feel better soon.
Posted 12/10/2015 5:57 PM (GMT 0)
Thanks for the replies...always appreciated!

ElpisUnbreakable...It's very possible it's acid related. I drink coffee (3-4 cups/day) and somedays I feel perfectly fine and other days sick to my stomach. I have to assume coffee is partly causing the problem and making me want to go as I need it in the morning to get going. I am going to try to wean myself down to see if that makes a difference. I also take a Zantac at night, which I assume should help. Thanks for the tip on Adrenal Fatigue.

Contentprof...I don't know if my maintenance drugs are working or not. As I tapered, there were times I felt perfectly normal and other times really sick but as I mentioned, my BMs are fine and no sign of bleeding. Other then coffee, my diet is pretty bland as it is.
Posted 12/10/2015 6:45 PM (GMT 0)
You have to be careful with the coffee. It always makes me go to the bathroom more and actually made my flare worse last year. I ended up cutting coffee completely out of my diet. It doesn't "make me better" by cutting it out however, it's one less thing that will make me feel crappy.

When you are in prednisone you always "feel good". It's when you come off that you need to watch more what you put into your body. By having prednisone in you, normally it's a quick fix so even if you are eating somthing "bad" it may not effect you. If you eat or drink the same items when you get off the prednisone it could have a completely different effect. That's what I've noticed in the past.
Posted 12/10/2015 7:56 PM (GMT 0)
MikezUC - I used to drink 2-3 cups of coffee per day and now I am down to 1/2-1 cup. It is really really hard to give up so I am not going to lecture there. I do find that taking a spoonful of coconut oil with my coffee reduces the acid. And of course, coffee does make you go. When I am not in a flare, I feel like that small amount of coffee keeps things moving and cleans out my colon. But this could be something I am just telling myself because I can't give it up :)
Posted 12/11/2015 6:13 AM (GMT 0)
Sounds like one of your issues may be rectal inflammation and rectal meds can help.
Look into mesalamine enemas or supps
Posted 12/11/2015 12:23 PM (GMT 0)
I'd be mindful and watchful of those symptoms and make sure you're not backsliding/regressing. Within a couple weeks post prednisone is about when it'd hit (untreated inflammation gets worse and starts showing uc symptoms). Stomach gurgling, urgency, inability to pass gas without worries are all signs of uc inflammation.

Enemas or suppositories containing anti-inflammatory mesalamine sound like a good idea.
Posted 12/11/2015 12:30 PM (GMT 0)
Just wondering why you were on pred in the first place and why you were on it so long ? Something isn't right if you were on it almost a year.
Posted 12/11/2015 4:41 PM (GMT 0)
The reason I was on pred so long was trying to find the right maintenance meds. I started at 2 Lialda/day and went to 4 and tried tapering and things got worse so I went back on Pred and started Azathioprine. Tried tapering again and had issues so I upped my Pred again and tapered real slowly, which is where I am today.

Not really sure what's going on but I feel like I might be slipping back. The symptoms iPoop are mentioning are pretty much what I am experiencing in addition to being thoroughly exhausted, which that I know is from stopping Pred.
Posted 12/11/2015 7:10 PM (GMT 0)
Mike have you ever been on any rectal meds? If not I would highly suggest requesting them from your GI.
Posted 12/11/2015 7:32 PM (GMT 0)
I have not ever been on rectal meds, but is that just a temp fix? After coming off of Pred, I would figure I didn't need anything else if my maintenance meds actually worked?

Regarding gas, I should clarify...I have a ton of it so there's no inability to pass it, if anything I have too much ability. Some days are more gassy then others.
Posted 12/11/2015 7:48 PM (GMT 0)
Rectal meds can be used long-term and they treat the rectum better than the oral meds. I think it's worth it to use them if you're having symptoms like urgency. With what you describe you're rolling the rice on the gas, one day you will get much more than you bargained for.
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