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Wife of UC/Crohns Fella - Prednisone/Remicade Side Effects?

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Ulcerative Colitis
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Posted 9/14/2010 1:54 AM (GMT 0)
Hi all - my hubby was diagnosed with Crohn's/Colitis three years ago. He was hospitalized a year later for ten days, and has done a slow crawl out of a very serious weight loss and very active disease. He's currently still mildly active, though improving greatly and steadily - he's had three doses of remicade, which has reduced his symptoms, allowed for weight gain, and a return to almost normal living, with few difficult days for him. He is scheduled for a fourth dose of remi, and is now weaning down off his prednisone (15 mg dose, down by 2.5mg weekly). I have noticed some fairly severe aggression and emotional ups and downs both with prednisone and especially with remicade, but since he has started to wean off his prednisone, it has been really challenging to cope with. I'm feeling a bit lost, and wondering if any of you have any insight on the emotional aspects of taking these medications - I've tried to be supportive and understanding, as much as one can understand when you don't have the disease. It's become really hurtful and he doesn't seem at all like the person I married - he's even quite short with our kids, and he's never one to lose it with the kids. Any information that you feel might be relevant would be appreciated - my marriage feels like it's headed down the tubes, just as the light went on at the end of a very long, dark tunnel for our family. Thanks for listening.
Posted 9/14/2010 2:51 AM (GMT 0)
I'm sorry to hear the news. My father complains of my mother's foul moods since she's been on prednisone for 9 straight years now, plus methotrexate for RA. Prednisone does make you irritable, and you don't realize how you're affecting others. It also affects sleep and appetite and really sets up for an emotional roller coaster.

Could you talk with a psychologist who deals with chronic pain/illness to get some insight?
Posted 9/14/2010 5:52 AM (GMT 0)
Hi..welcome to the forum!!

Your husband has Crohn's colitis...that's Crohn's disease in the colon. It's not a combo of UC and CD..just for clarification.

Is your husband's CD throughout his entire colon?

Has he ever tried any of the 5ASA meds, oral and rectal?

I would hate to ever go on pred especially because of the emotional ups and downs (I'm like that without it..lol).

It's awesome you're so supportive and understanding....but when people become another "person" while on meds...I think the first thing to do is have that person recognise a change in personality. Especially with kids involved in the mix.

Maybe in the future he can avoid the pred and hopefully see if the 5ASA meds can work for him in conjunction with the Remi.

quincy
Posted 9/14/2010 12:11 PM (GMT 0)
Thanks for the responses. He actually has UC, but has had some strange involvement in his mouth and esophagus - his lesions are colitis, and he has no other symptoms of Crohn's, but he has on one occasion (which led to his hosp. stay) had them all the way up to his mouth. Unusual for Colitis, and so they've "classified" it as Crohn's/Colitis, because his specialist can't confirm what in fact it is. It's apparently very rare - he had a lot of visits from students and specialists from other hosp. to look at his throat. We joke that his throat lesions are famous... he had to stave off further scopes into both ends for "research"...

He has tried 5ASA in both ends, which worked at first diagnoses, which was proctitis, and he was only very mildly active. Epic fail when his UC went very active and spread. The prednisone WORKED and fast when he was very ill, but as everyone knows, the side effects are awful. His UC is not throughout - just lower.

When he's out of his fog of meds, he realizes that it's the meds - it the time that he's having a high/low that are difficult. I guess it's just our challenge as a family right now - I've encouraged him to come here, to talk to others who are facing the same challenge, but he's not ready. We had been seeing a therapist who we both love, and who has faced her own challenges with cancer. Perhaps it's time we went back for a tune up. Thanks for the suggestion.
Posted 9/14/2010 3:36 PM (GMT 0)
It likely the prednisone that is causing the mood issues, not the Remicade. The side effects are probably getting worse, even as he tapers. I don't think there is any reason Remicade would cause it, so hopefully he will be better once he is off the prednisone. Many won't take it because these effects are so bad, difficult.
Hang in there, I'm sorry this is so hard.
Posted 9/14/2010 4:12 PM (GMT 0)
Prednisone makes me angry when I'm taking it and depressed and angry when I am tapering. I have not noticed any mood changes with Remicade. I suspect that once your husband is off the pred. and his adrenals are functioning normally his mood will improve. Hang in there!
Posted 9/15/2010 12:23 AM (GMT 0)
Hi:
I think it's great that you are taking the time to understand the disease and side effects he's living with.

I've been on Pred for 5 weeks now and I'm amazed at what it does to your brain. I find myself very angry for silly reasons (I mean out of control angry), sad and crying for others. I also have a really hard time concentrating, especially at work. It's like my brain needs an hour to start up.

I also find I can't seem to filter what comes out of my mouth: something that I wouldn't have said to someone before the Pred just "comes out", so I find myself constantly questioning whether what I'm thinking of saying is appropriate or not. It's like your "social filter" is broken. Things that you normally wouldn't have said and done, you do. Then I beat myself up about it once I realize that I could have handled things differently.

I think awareness is key: since I've researched this forum for Pred side effects, and are aware of how they can change my behavior, I constantly try to monitor myself. I ask my husband to help with the kids when I notice myself a little "off".

I hope your husband can come on the forum and read a bit of what the Pred has done to those of us who have been on it. It's a real eye opener. I'm sorry you're having to live with this unpleasant and unusual behavior, but your husband is living with something just as bad. Awareness is key though.

Best of luck!
Posted 9/15/2010 3:04 AM (GMT 0)
Thanks everyone for your openness! Just knowing we're not alone is a great comfort.
Stay positive everyone.
Posted 9/15/2010 4:56 PM (GMT 0)
I'm on Pred right now but not for my UC, something unrelated and it's keeping me up all night. Usually my only reaction is increased hunger but it's been a few years since I've been on it.

luckly it's only a 2-3 week cycle.

I'm trying to make the most of it getting house work down at night
Posted 9/15/2010 5:20 PM (GMT 0)
Prednisone is notorious for making peoplle have mood swings and for making them short fused.  I don't think it has anything to do with the Remicade.  Please be patient, I know you already have been but please continue the fight and try to understand it's not your man, it's the pred.  I myself have not been myself while taking this drug. 

Keep up the fight.

MyUC

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