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Fatigue with Remicade

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Posted 1/26/2012 8:00 PM (GMT -8)
I am 24 years old and have had Ulcerative Colitis for 3 years. Lialda and Mercaptopurine have not worked so I moved on to Remicade about 6 months ago. Things are great and my BM's are relatively normal. I do get a little itchy from time to time but that is ok.
My biggest concern is that I am tired all the time. I get anywhere from 7 to 11 hours of sleep a night and yet I'm still exhausted during the day. Even on days that I sleep in till noon I wake up groggy and feeling tired as can be, and the fatigue lasts all day.
I used to be very active and full of energy but now a lot of the time I just feel like doing nothing at all while I used to not be able to stay still, always jumping on my bike and hauling 30 miles a day just for the sake of doing so. I still try to be active, not as much for leisure but because I know its healthy, but its a struggle.
I have read how other remicade users feel tired the day of their infusion but then it goes away, does anyone else feel fatigued all the time with remicade?
Is this my body getting used to the remicade? Will my fatigue go away eventually? Or is this just something I have to learn to deal with? Would Humira be any different in regards to fatigue? I hate to bring it up but if I ever ended up having surgery, could that bring up my energy level again? As I said I have failed with lialda and mercaptopurine and figure that remicade/humira is the last option before surgery, is their any other major alternatives?
I will also look into diet, I eat healthy generally but I also eat a lot of processed foods. maybe my body can't tolerate Gluten..? I'm just trying to think of reasons for my fatigue, something to blame it on other than the remicade because I am otherwise very pleased with this med.
Basically I'm just trying to figure out if I will ever get my energy level back. I'm almost positive its the remicade, but if anyone has any other ideas please share, by the way I am currently on no other meds, except for pre meds before my infusions - I had a bad reaction after one of my infusions.
Any ideas/personal stories/alternatives/suggestions/comments/Anything would be greatly appreciated.
Posted 1/26/2012 8:13 PM (GMT -8)
i personally felt really tired after i got my 4th infusion, in the first 3 to 4 weeks I was sleeping about 10hrs a day minimum, i would not want to wake up being really tired. i could not get up if i only slept like 7-8hrs.. it eventually the fatigue has started to disappear now i can wake up after 8 hours of sleep and im not as tired as i use to be in the earlier weeks of the infusion
Posted 1/27/2012 4:05 AM (GMT -8)
Give the Remicade a little more time, it (fatigue) may pass like ucblows19s did. Otherwise, quit eating processed foods, refined sugar, etc., there not good for you regardless. As far as gluten goes, you can be tested to see if your allergic, however, I think if you had an intollerance, you'd have digestive issues, not fatigue.

Talk to your GI. Sounds like your in remission....that's great, you don't want to change that. However, you do need to get the fatigue figured out.....Good luck.
Posted 1/27/2012 5:10 AM (GMT -8)
I've been extremely fatigued and sleepy since my last flare/starting Remicade. I don't know if it's the Remicade, overall malfunctioning immune system, or something else entirely. My GI says that we shouldn't be fatigued all the time if we're in remission.

Going GF and eating more healthy (less processed foods, sugar, dairy) has not made a difference.

It seems that quite a few of us deal with constant fatigue. See Sara14's thread "OT-really tired."
Posted 1/28/2012 6:47 PM (GMT -8)
Same here cant get enough sleep, and when I get up even when I had 10hrs I feel like I got a terrible sleep. Remicade now on 5th treatment and things are getting better but I wish I had the energy to enjoy it!
Posted 1/28/2012 6:54 PM (GMT -8)

nightrunner said...
I am 24 years old and have had Ulcerative Colitis for 3 years. Lialda and Mercaptopurine have not worked so I moved on to Remicade about 6 months ago. Things are great and my BM's are relatively normal. I do get a little itchy from time to time but that is ok.
My biggest concern is that I am tired all the time. I get anywhere from 7 to 11 hours of sleep a night and yet I'm still exhausted during the day. Even on days that I sleep in till noon I wake up groggy and feeling tired as can be, and the fatigue lasts all day.
I used to be very active and full of energy but now a lot of the time I just feel like doing nothing at all while I used to not be able to stay still, always jumping on my bike and hauling 30 miles a day just for the sake of doing so. I still try to be active, not as much for leisure but because I know its healthy, but its a struggle.
I have read how other remicade users feel tired the day of their infusion but then it goes away, does anyone else feel fatigued all the time with remicade?
Is this my body getting used to the remicade? Will my fatigue go away eventually? Or is this just something I have to learn to deal with? Would Humira be any different in regards to fatigue? I hate to bring it up but if I ever ended up having surgery, could that bring up my energy level again? As I said I have failed with lialda and mercaptopurine and figure that remicade/humira is the last option before surgery, is their any other major alternatives?
I will also look into diet, I eat healthy generally but I also eat a lot of processed foods. maybe my body can't tolerate Gluten..? I'm just trying to think of reasons for my fatigue, something to blame it on other than the remicade because I am otherwise very pleased with this med.
Basically I'm just trying to figure out if I will ever get my energy level back. I'm almost positive its the remicade, but if anyone has any other ideas please share, by the way I am currently on no other meds, except for pre meds before my infusions - I had a bad reaction after one of my infusions.
Any ideas/personal stories/alternatives/suggestions/comments/Anything would be greatly appreciated.

I don't think it's the remicade. I wonder, before you went on remicade were you tired also? I think that maybe when you are fully healed, you should regain your energy. At one point in time you should have another colonoscopy to see if your colon is still inflamed.
Posted 1/28/2012 7:25 PM (GMT -8)
I used to have bounds of energy. I was tired for a period when on mercaptopurine because my blood count was down and I became anemic. I guess I've more or less felt at least a little tired since my diagnosis 3 years ago, except when I'm back on prednisone, that gets me feeling normal again as far as energy and stamina is concerned. But the remicade seems to make me feel tired all the time.
I just got my first blood tests back since my remicade infusions started and they are all in range, no problems.
I think I'll just give the remicade more time, its only been 6 months. for nearly 1 1/2 months of that I was on prednisone to counteract my flaring - I was weening off mercaptopurine.
I'll see how it goes, it might be something that I just have to deal with, this may be the best it gets. Its just tough because it limits me so much and I'm not as enthusiastic about doing things with friends and family.
Posted 2/5/2012 6:08 PM (GMT 0)
I have been on Remicade since May 2008. I started having severe fatigue about 2 or 3 months after I started it. It took about a year and a half to achieve remission (by increasing dose of Colazol). I am able to force myself to get to work most of the time, but after work and on weekends I just want to stay in bed. I also have fibromyalgia and see a rheumatologist. I saw a psychiatrist a little more than a year ago, but the antidepressant he prescribed, citalopram, really didn't help, just made my hands shake like crazy.   I just started with a new shrink and I'm seeing a new GI in 2 weeks. It's difficult to sort out what's a side effect, what's due to the disease, and what may be due to possible depression. I used to exercise 5 days a week when I was very sick with my UC. Now I just want to lie around. I don't think it's any worse right after my infusions, although I tend to get nauseous the day after the infusion. I have been mildly depressed in the past but I have never, ever experienced anything like this before.
Posted 2/5/2012 7:17 PM (GMT -8)
nightrunner, i'm the same as you. i need so much sleep. i get like 9-11 hours a night and if i could, i'd take a 2 hour nap every day, too. i even fell asleep at my grandma's birthday party today after getting 9 hours of sleep haha

i also see that you weened off 6mp? how did you do that- what was your starting and ending dose?

Posted 2/5/2012 7:19 PM (GMT -8)

bananagirl said...
nightrunner, i'm the same as you. i need so much sleep. i get like 9-11 hours a night and if i could, i'd take a 2 hour nap every day, too. i even fell asleep at my grandma's birthday party today after getting 9 hours of sleep haha

Hey Bananagirl, tell your dad he's my hero. He gets colitis, doesn't change a thing, colitis disappears . smilewinkgrin

He rocks!
Posted 2/5/2012 7:21 PM (GMT -8)
somedude, it's so unfair!!! and i will tell him. he'll laugh and say "it's because i eat a lot of meat and don't sit on my ass."
Posted 3/6/2012 1:51 PM (GMT -8)

I am 39, have been on Remicade for 2 1/2 years now, and still experience the same daunting fatigue many of you are experiencing.  I actually found this thread by doing a Google search for Remicade and fatigue!  I am self-employed, work over full time most weeks, but try to get as much rest as possible.  Unfortunatlely, it doesn't leave much time for anything else, between work and sleeping.  It's even become an issue in my marriage because my husband will want to go do things on the weekends and I just want to stay in bed.  I know if I don't get my rest, then I risk getting sick and being down even longer.  It's a vicious cycle.

I do have depression and been taking Paxil for a number of years.  I don't remember having the fatigue with just the Paxil alone.  I don't think I have any other conditions, even though I do wonder if I might have fibromyalgia because I'll get these pains in different parts of my body and they just ache and are tender to the touch.  Very strange. 

If anyone else has any suggestions or advice, I would love to hear it.  Glad to hear, however, that I'm not alone!

Lisa

Posted 3/6/2012 2:08 PM (GMT -8)
It's definately the remicade that makes you tired, I have the same thing.. it's like my core energy is gone..

But.. My UC is in Remission..

If this is the trade to not have colitis I will take it! LoL..

My life is much more relaxing right now, I enjoy doing nothing at home more then going out...

I am curious what causes this.. Is there a link between your immune system and energy level?

 

Posted 3/6/2012 3:27 PM (GMT -8)
So glad I saw this thread! I'm having so much fatigue since starting Remicade. I've been working out or walking everyday. Limiting my sugar. Still exhausted!
Posted 3/6/2012 7:20 PM (GMT -8)
Yep, add me to the Remi fatigue camp! Since starting it, usually when I wake in the morning I'm fine but around early afternoon I just get soooo tired. If I do things that require any form of physical exertion, I am wiped by 7pm.
Posted 3/6/2012 9:33 PM (GMT -8)
I'm wondering if any of you have restless nights? I started Remicade 2.5 months ago, and about a month ago I started waking up almost every night with restless legs. Even though I'm tired, I can't get back to sleep because my body is so restless. Perhaps this has happened to you Nightrunner?

I think this is why I'm so tired during the day, because the quality of my sleep is so lousy. Even though I try to get out of bed when my kids go off to school, I have to get back in bed and sleep for 2.5 more hours! Makes for a very unproductive day.
Posted 2/4/2013 2:45 PM (GMT -8)
Just a follow up note...I posted about Remicade and fatigue almost a year ago. I finally stopped the Remicade; last dose October 2012 (after an abnormal pap smear). I am really starting to feel better and my energy level and life outlook are improving. I am actually getting out and socializing, making plans for my future, and picking up my life where I dropped it before I went on Remicade. So far, only minor UC symptoms. I have an appointment with a new GI in a couple of weeks, but am trying to maintain my remission on Colazol, VSL 3 and LDN.

I still don't feel 100%, but much better than I did on the Remicade. I am sleeping better, waking up without effort, having clearer thoughts, and every day my energy seems to improve a little. I'm not on any medication to treat depression at this time.
Posted 3/26/2018 1:45 PM (GMT -8)
Hopefully you guys are still getting notified by this thread. Has anyone else found that coming off of Remicade has improved their fatigue? I am having the same issue and am not sure if I should come off. My fatigue has been really bad and it seems to line up when I started my Remicade / EntyVio treatments

Post Edited (dan.howard.c) : 3/26/2018 3:49:54 PM (GMT-6)

Posted 3/27/2018 4:07 AM (GMT -8)
Do you have anemia (low blood iron), low b12 as those can cause fatigue? For some of us fatigue persists into a remission.
Posted 3/27/2018 9:23 AM (GMT -8)
Fatigue here as well. 33old male. Diagnosed June last year, was running 10-20 miles a week if not more and eating somewhat healthy. Got UC in June, tried everything but Remicade was my last chance before surgery. Now I can only run 1-2 miles on a single day, feels like a half marathon after I’m done.

Also, extremely foogy in my mind, always forgetting little stuff. It’s weird. Thinking about getting back on Adderall. Maybe it would help my focus. I dunno. Good topic.
Posted 2/5/2022 11:51 AM (GMT -8)
I have had 2 remicade infusions both times have had headaches and very hungry. Is this normal?
Posted 2/5/2022 7:08 PM (GMT -8)
This is a really old post. Sometimes it better to start a new one.

In regards to your question. Remicade gives me a headache and I am very hungry or suddenly very nauseous for about a week afterwards. Then I am just hungry and tired all the time.

When I finally went into remission I wasn't as tired. (I've been fatigued since I first developed Crohn's... It's just a matter of how tired I am that day. It varies) When I start flaring I can barely get out if bed.

Clo
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