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Crohn's Disease Forum » Ulcerative Colitis Forum » Just finished pred and symptoms are back...


11-01-2013, 10:31 PM   #1
LNS87
 
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Just finished pred and symptoms are back...

So I had a flare of my UC start in August and finally got into the GI and started 5 weeks of pred in September. Now, this flare did not have all my original UC symptoms, i mainly had pain and a little blood on the toilet paper but thats it - no diarrhea, no major weight loss, etc. I just finished the pred this past week, and my belly is already starting to act up again. The pain is back, although not as bad as it was when I started the pred, along with some cramping, a little blood, and looser stools (not quite diarrhea though). I am hoping it is the fact that I am eating a variety of foods again or maybe a little too much Halloween candy but my gut feeling is that its the flare coming back. I have a follow up with the GI next week so obviously I will be asking them, but until then, any advice or suggestions? Is it weird that the symptoms would come back so quickly?
11-02-2013, 06:21 PM   #2
2thFairy
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It is unfortunate, but not unusual, that your symptoms would come back now that you have finished the prednisone.
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11-02-2013, 07:26 PM   #3
Jennifer
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You could try a softer diet that's low residue and possibly a liquid diet if you feel that things are really bad until you see your GI next week. That would at least help with the symptoms a bit for now. If you aren't on any other medications then it would be good to discuss your options to help keep you feeling well and prevent inflammation rather than using Prednisone as needed. Keep us posted.
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11-03-2013, 07:22 PM   #4
FrancisK7
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What else are you taking for your UC? Prednise isn't a long term treatment anymore, it's used to address acute and aggressive flares. There's usually a 5-ASA that is prescribed to maintain remission.

Are you on something else?
11-05-2013, 12:50 AM   #5
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I am on Asacol HD, which i have been on since diagnosis in March 2012. I know prednisone is basically a bandaid fix to get the inflammation down. I am hoping when I go to the GI this week, they will either change or add something to keep the symptoms from coming back anymore. Thats the bummer of coming off the pred - after feeling so great the symptoms are even more noticeable than they were beforehand.
11-05-2013, 03:54 PM   #6
FrancisK7
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People with chronic diseases become really good at listening to their body and identifying the signs at some point. If your gut feeling tells you it's a flare, you are probably correct.

It's not weird that symptoms would come back so quickly if the Asacol isn't doing its job, which apparently it isn't. Did you EVER see improvement on Asacol? 5-ASA work for a lot of people but they do not work on everyone. I tried three different types (Salofalk, Mezzavant and Asacol) and not only did they not help, they made me worse.

They may put you on a different 5ASA or prescribe suppositories which are more effective in their delivery but it depends where your UC is. Pan, one-sided, rectum?

Or they might move on to immunomodulators, but they take some time to act.

They might even put you on biologics immediately. It really depends on the doctor, the insurance carrier and the situation.

In the mean time, if you fear the pain, there are diet changes you can make that will give your GI tract a break. Cannabis is also tremendously helpful.

Good luck.
11-07-2013, 06:44 AM   #7
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I am in the same position. I have been on a step down of prednisone since July. I am down to 10 mg and my symptoms are returning. I also take 4800 my of lialda daily and am not sure it is working for me. I go back to the GI in Dec, so will pursue a different treatment
11-08-2013, 01:02 PM   #8
LNS87
 
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Update:

Saw GI yesterday and told her about the mild symptoms I am starting to experience again - looser stools, more frequent, less appetite, blood on TP, pain, etc. Even though I don't feel too bad yet, she wants to go ahead and do a scope and see whats going on before we move onto new meds, because she thinks it may be time to try biologics. I've been on two long pred tapers in the 2 years so she doesn't want to keep putting me back on pred. She was ready to scope me today or Monday, but I have to work plus I am heading to Vegas for Team Challenge Half Marathon next week so i told her I'd really prefer to wait until after, especially since I am not feeling that bad. She finally agreed, so it is scheduled for Dec 12th. I also got them to agree to mag citrate prep instead of suprep since I did much better with that one.

In the meantime, she has started me on Canasa in addition to my Asacol and also gave me Recticare lidocaine cream to help with symptoms and keep inflammation from getting worse. I do have pancolitis as seen on my last scope in March 2012, but she didn't want to try anything else until they scope me and get the full story. The Asacol had kept me in remission for over a year but I don't feel like its helping all that much anymore since my symptoms don't seem to be in control without pred at this point. I am hoping there will not be too much inflammation and that i won't have to start the big gun meds already but I guess time will tell.

Thank you all for your support and advice so far!
11-11-2013, 12:52 AM   #9
Jennifer
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Hope the scope goes well. Keep us posted.
08-03-2014, 06:02 PM   #10
Ann Morgan
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Why can't people take prednisone all of the time ? I have never known the answer to this. I was on prednisone for a short while in 2001 when I had Optic Neuritis in my left eye. The whole time I was on the prednisone I never had any diarrhea at all. I was SO HAPPY. I felt like this was a wonder drug. I also did not have all of the aches and pains that I normally was having due to some physical health issues. I loved the prednisone ! What are the long term side effects of prednisone ?
08-03-2014, 06:47 PM   #11
2thFairy
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Why can't people take prednisone all of the time ? I have never known the answer to this. I was on prednisone for a short while in 2001 when I had Optic Neuritis in my left eye. The whole time I was on the prednisone I never had any diarrhea at all. I was SO HAPPY. I felt like this was a wonder drug. I also did not have all of the aches and pains that I normally was having due to some physical health issues. I loved the prednisone ! What are the long term side effects of prednisone ?
Diabetes is a well-known side effect of long-term prednisone use, that does not always reverse itself after discontinuation of the drug. Cushingoid syndrome, increased risk of cataracts, early onset osteoporosis, weakening of cartilage, and others that I can't think of right now. Prednisone long term, especially the higher doses that most of us here on the forum have had to take, can be very damaging to your body.
08-03-2014, 06:56 PM   #12
Ann Morgan
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Thanks for the response !

PS: This is a photo of me when I was a kid. Wish I was young again.
08-04-2014, 12:26 PM   #13
jwfoise
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Diabetes is a well-known side effect of long-term prednisone use, that does not always reverse itself after discontinuation of the drug. Cushingoid syndrome, increased risk of cataracts, early onset osteoporosis, weakening of cartilage, and others that I can't think of right now. Prednisone long term, especially the higher doses that most of us here on the forum have had to take, can be very damaging to your body.
Just to add to the list.... it often increases appetite, but not metabolism, resulting in large weight gain. And a lot of people have emotional and/or pyschological effects.
08-04-2014, 11:33 PM   #14
Ann Morgan
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Yeah, I do remember when I was on the prednisone for my Optic Neuritis back in 2001 that I had a TREMENDOUS appetite ! I think I gained 4 pounds the first week I was on it !
08-05-2014, 07:21 PM   #15
vonfunk
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I was on pred for several years, every medication had failed, and because it isn't a long term solution I chose to have surgery.

It's a sub section of the surgery forum.
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08-14-2014, 05:33 PM   #16
BlackButterflies
 
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I went on pred about a month ago for one week - passing tarry coffee grounds, threw up blood and bad stomach pain. Cleared up within the week. After that its been straight downhill until this week and now back on it today but a much higher dose. Weight loss, stomach pains, blood... I just want these symptoms to go away so I can work normally. If it isn't gone within the week this time I might end up in the hospital to hopefully kick it.
08-14-2014, 06:41 PM   #17
2thFairy
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I went on pred about a month ago for one week - passing tarry coffee grounds, threw up blood and bad stomach pain. Cleared up within the week. After that its been straight downhill until this week and now back on it today but a much higher dose. Weight loss, stomach pains, blood... I just want these symptoms to go away so I can work normally. If it isn't gone within the week this time I might end up in the hospital to hopefully kick it.
What other meds are you taking?
08-14-2014, 07:02 PM   #18
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I am on 4.8g of Mesalamine and 500mg of Salofalk. The pred is 40mg.
08-14-2014, 07:04 PM   #19
2thFairy
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Sounds like you need something more like azathioprine or 6MP with as much trouble as you are having.
08-14-2014, 08:02 PM   #20
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I think you may be right. I am going to go and see my GI doc again to reassess. My family doctor seems to know nothing.
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