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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Has prednisone made your symptoms worse?


08-21-2011, 08:08 AM   #1
dannysmom
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Has prednisone made your symptoms worse?

Hi all,
I asked this question on the regular forum when I joined but really only found the negative responses to prednisone being the normal pred side effects.

When Danny first became ill, he had mouth ulcers and lots of joint pain - on top of his constant fatigue, abdominal pain, sore throat & diarrhea. About a year into his illness, when doctors suspected Crohn's disease he was put on 30mg of Prenisone a day. By day 3 all of his constant symptoms were much worse AND his mouth ulcers and joint pain were back. (He was also eating a lot due to the pred.) After 2 weeks - and him begging to stop the prednisose we began to taper over another 2 weeks. By the time he was off of prednisone, his symptoms were back to baseline. I never got an explanation from any of his doctors for this, some said:
"Could be a coincidence" - I doubt that given the taper helped.
"Some patients are prednisone-resistant" - this was not resistence, he was worse.
Others said they are not sure. (at least honest)
I immediately went back to infectious disease thinking that Danny must have some sort of pathogen as usually only bacteria, virus, etc get worse if on prednisone. They agreed to do a few tests but still thought Danny has Crohn's so would not do more.

Just wondering if any other undiagnosed patients had a similar experience?

Thanks!!
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
08-21-2011, 08:18 AM   #2
Cat-a-Tonic
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Hi Jeanne. I was only on prednisone for two very short periods of time (5 days at 10 mg, and then later 6 days at 20 mg) so I was never at a high dose for a long period of time. Having said that, my experiences with prednisone were totally positive. "Euphoria" is listed as a possible side effect of pred, and I definitely had that! When I first took pred, I wasn't sure if it was going to work or not, but within one hour of taking the first pill I felt a noticeable difference - I had more energy and felt less awful. Within the first 24 hours of taking it, my symptoms pretty much disappeared and I felt great - like a million bucks! When my 5 day initial trial of pred was finished and I stopped taking it, my symptoms came right back again with a vengeance and I went back to feeling awful. So my experience while on pred was very positive and it really helped me when I was taking it. Sorry I can't be of more help to your son or his experience. I hope you and he find something that works for him, and of course that he can get a proper diagnosis soon!
08-21-2011, 08:20 AM   #3
Crohns08
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Hey Jeanne,

Danny sounds very much like me when I'm on prednisone and my last doctor (not my current one) told me that it wasn't possible to have those kinds of symptoms from prednisone either, so my Dad and I did a little digging and come to find out Prednisone does cause joint pain and it can cause abdominal pain in some patients. Especially those that don't eat a lot. Matter of fact I just started another cycle of prednisone and I don't tend to eat a lot when I'm on it (I know, counterintuitive, but true), and I get the worst pains if I don't have at least three square meals a day because of the extra stomach acid. What you can do is ask if he can get a prescription for something like protonix which is supposed to inhibit stomach acids or you can try maalox which is supposed to be the best thing you can take with prednisone. I find even chewing the max dose of extra strength tums and a heating pad will work as well. I hope this helps you out, the pain from pred that I've experienced can be unbearable at times. Good luck to you and your son.
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08-21-2011, 02:06 PM   #4
SmileyMinx
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I am as yet undiagnosed, but they suspect Crohn's. The ER doc put me on 30mg of Prednisone a day for 10 days. By the time I saw the GI doc on day 6, I felt horrible, much worse than I did when I went to the ER. I thought I was dying. My heart felt like it was going to burst out of my chest, but it woud skip beats too. I had days of uncontrollable crying, just out of nowhere. I was sick to my stomach and extremely tired. Every symptom that took me to the ER in the first place was increased 10-fold. The GI doc was angry that the doctors I had seen to that point were 'throwing meds at the unknown', and weaned me off of the Prednisone over the next 4 days. The day after I took the last pill I felt tremendously better, at least back to my 'normal' level of discomfort. If I NEVER have to take another one of those it will be too soon.
08-21-2011, 02:52 PM   #5
dannysmom
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I am as yet undiagnosed, but they suspect Crohn's. The ER doc put me on 30mg of Prednisone a day for 10 days. By the time I saw the GI doc on day 6, I felt horrible, much worse than I did when I went to the ER. I thought I was dying. My heart felt like it was going to burst out of my chest, but it woud skip beats too. I had days of uncontrollable crying, just out of nowhere. I was sick to my stomach and extremely tired. Every symptom that took me to the ER in the first place was increased 10-fold. The GI doc was angry that the doctors I had seen to that point were 'throwing meds at the unknown', and weaned me off of the Prednisone over the next 4 days. The day after I took the last pill I felt tremendously better, at least back to my 'normal' level of discomfort. If I NEVER have to take another one of those it will be too soon.
Wow - that sounds exactly like Danny. Every symptom 10X worse. His reaction to prednisone is what made trying other Crohn's medications (6MP or biologics) out of the question for docs. His colonoscopy biopsies done a few months before trying pred showed non-specific inflammation in several areas of his digestive tract. Did your colonoscopy earlier this month show anything abnormal?

Thanks for all the replies!!!!
08-21-2011, 07:34 PM   #6
SmileyMinx
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Wow - that sounds exactly like Danny. Every symptom 10X worse. His reaction to prednisone is what made trying other Crohn's medications (6MP or biologics) out of the question for docs. His colonoscopy biopsies done a few months before trying pred showed non-specific inflammation in several areas of his digestive tract. Did your colonoscopy earlier this month show anything abnormal?

Thanks for all the replies!!!!
Unfortunately, I don't get the results from the colonoscopy until the 30th, so I don't know anything yet.
08-21-2011, 09:50 PM   #7
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Well I know I'm weird, but I really hated that pred, I gained so much! Cried all the time, and I couldn't sleep enough, some days I didn't think I could make it home from work. I really don't think it helped me at all. I told my doc I would never take that stuff unless I really have too! I felt the same pain, and then all the other stuff was there now, but I was on it for a year. Then when I got to my new doc he said, lets get you off this crap! I wanted to kiss him I was so happy! He has me on Entocort EC 3mg, three a day and Azathioprine 50mg, two a day. I have also taken Pentasa randomly, I liked it, seem to help a lot. Hope things get better for you soon! Good luck!
09-04-2011, 11:02 AM   #8
Sbailey
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Prednisone was the worst medication I have been on/tried at this point. My pain was worse, I couldn't sleep, I ate all the time and my chest felt like it was going to explode. I was taken off of it and put on Imuran. Results seem to be much better, although I still have bad days. I am seeing a third specialist at this point at the Cleveland Clinic, because no one can say for sure if it is or is not Crohn's. I am anxious to get a firm diagnosis so I can make a plan and get on a road to feeling better. Good luck to you!
09-06-2011, 05:26 PM   #9
SmileyMinx
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Well, I got the results of the colonoscopy on the 23rd, which showed everything was normal except for a stricture. The stricture prevented the scope from traveling into the small bowel so they scheduled me for a CT enterography for the 25th, which would tell them if I needed surgery to remove part of the small bowel or not. I got the results from that today and they have been able to confirm Crohn's Disease, but no surgery as yet. I had a lot of bloodwork done and a TB test today and will be scheduled to receive Remicade by IV as soon as those results are in.
09-06-2011, 06:15 PM   #10
dannysmom
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Well, I got the results of the colonoscopy on the 23rd, which showed everything was normal except for a stricture. The stricture prevented the scope from traveling into the small bowel so they scheduled me for a CT enterography for the 25th, which would tell them if I needed surgery to remove part of the small bowel or not. I got the results from that today and they have been able to confirm Crohn's Disease, but no surgery as yet. I had a lot of bloodwork done and a TB test today and will be scheduled to receive Remicade by IV as soon as those results are in.
I am sorry you have Crohn's, but really hope this means you will get proper treatment. How was the CT enterography? Did you need to have a tube inserted into your stomach to quickly fill it with some contrast liquid? My son has not had any sort of CT or MRI done yet. Thanks so much for letting me know. Please also let us know how the remicade works for you.
09-06-2011, 10:29 PM   #11
SmileyMinx
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I am sorry you have Crohn's, but really hope this means you will get proper treatment. How was the CT enterography? Did you need to have a tube inserted into your stomach to quickly fill it with some contrast liquid? My son has not had any sort of CT or MRI done yet. Thanks so much for letting me know. Please also let us know how the remicade works for you.
Had to drink three bottles of a barium liquid. No flavor and made me gag some but it wasn't horrible. The colonoscopy liquid was MoviPrep, which wasn't bad. Then it was just lay in the machine and hold my breath when they said to. I will let you know for sure. A little worried about it after reading about it, but if it helps I'm all for it.
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