Humira Fatigue

I've had Crohn's for 23 years, so have had lots and lots of experience with meds.  I've been on weekly injections of Humira for 4 years (benefit of being a regular Mayo patient, you get to try everything first ).  The Humira seems to be keeping my Crohn's under control, or more so than anything else, but for the last 9 months I have been experiencing the worst fatigue of my life.  I've tried everything to think of - anti-depressants, vitamins, and I already get B-12 shots.  A recent infection has kept me from my Humira injections for 2 months now, and I'm beginning to feel really good again.  I can actually get up and, like, leave the house and stuff.  Blood tests have never revealed a Humira connection, but I'm wondering if the chronic use of the drug is the cause of the fatigue.  Is there anyone else who has experienced this with Humira?  Thanks so much.

ps. Welcome!

Well, I think everybody's different. In fact, it's possible that the *usual* experience may be to experience no (or few) side effects, as this is what the doctors so often assure us will happen. However, there do need to be an unlucky few who get side effects, and there are people on this forum who have had incredibly severe reactions, reactions severe enough to prevent them from taking the drug ever again.

I have been told that there was one patient at "my" hospital who was so fed up with the fatigue and flu-like symptoms Humira that she refused to take Humira anymore - quite a big step for someone in my country, where there's no other medication available yet.

I.

I had the same problem and finally had to stop taking it. I was also having horrible joint pain in my feet that made walking difficult. I was supposed to switch to Cimzia but my insurance won't approve it.

Hi I am a regular patient at the Mayo also. I havent been on Humira but was on Remicade for 3 years and just switched to Cimzia In September. On Remicade it was taking 2 hours for them to get the IV started and then it would infiltrate in the middle of the infusion and they recommended a port-a-cath but my doctor didnt want to do that due to risk of infection,etc. So he switched me to Cimzia. I am scheduled to get my next injection on Friday and am now on scheduled to receive them every 4 weeks. I was so tired that I couldnt function after the last injection. I had a blood work up and nothing showed in my blood as being off, everything was normal and my thyroid also. I have no appetite on the Cimzia to speak of so I hadnt been eating well. I was referred to a dietician who gave recommendations and that has helped a little. I am still quite tired more than I ever was on Remicade. I am anxious to see what I feel like after this injection on Friday. I have forced myself to go to the gym and start exercising again too. My doctor said he didnt want to take me off it as he feels he is running out of options. I like having a home health nurse come out to do the injections instead of the infusions which took half the day at the hospital. The main difference I have noticed with the Cimzia is that my fatigue is major, no energy, strong lack of appetite, some mild muscle pain and constipation which is weird.
I can totally relate to the feeling of no energy and feeling like it is all in your head. My doctor tells me I am doing great and I try to keep thinking that I have been able to avoid surgery which is good and the hospital. It is just the day to day stuff that is frustrating and you do get behind with things and it is hard to keep going sometimes. I waste a lot of time and have a hard time motivating myself to do more.
I also have had feet problems and sometimes in the back of my mind I wonder if it is related to the meds. I saw a Podiatrist for 5 months for my left foot and got therapy and two steroid shots and now my right foot is sore in the morning also but not as bad. The Podiatrist tried to recommend surgery to me and I refused and kept praying that it would get better. They still aren't normal yet but alot better.

Thanks. I am hoping my renewed focus on my diet will help with the fatigue too. I am 45 years old and noticed a big change in problems with IV's for quiet a few years. They always put a PICC line in during hospital stays. I just baby my feet and I dont walk barefoot in the house anymore. I sometimes wonder what these meds do to our bodies but it is definitely like a catch 22.My health is fine for now, no surgery which is the big goal as I have had too much (last one 2001). I think Cimzia will make a difference and actually have a positive outlook about it. My appetite has improved some too.

I think checking your ANA might be a good idea.

Well now I don't think I'm insane, took one treatment of Remicade and had allergic reaction so GI Dr put me on Humeria. Still having Crohns symptoms after 2 months on Humeria but my biggest problem would be the feeling of exhaustion all the time. I'm usually very energetic and now I feel as though I can't get up and go and having a lot of joint pain. Im thinking of telling GI Dr I don't want to take this anymore but am so scared of being put back in hospital for blockages and then the steroids I never want to take them again. Has anyone tried natural cures for Crohns a local guy at our herb and spice said he could fix thus disease starting with slippery elm. Give me some feedback please I'm tired of all these meds that will probably end up killing me before the Crohns does

ive been taking humira for approx 2 months or so and have felt rubbish since day 1.
I am extremely tired all the time, not just at certain times of the day.
Joint pain, aches everywhere, headaches (the worst headaches for about a week!) shortness of breath and as of late a quite painful chest/back.

Im seeing my GI today im fighting him to get me off of this drug even though i havent really given it that much time, only i have no medical answers left after this..
but right now id rather deal with a flare at least then i know what and where my pains are coming from why and how to cope with them!!
With it being such a hefty drug, all you do is constantly worry about new pains I have seen the doctor or been to A&E multiple times already, possibly more so than i have for actual flares!

After 2+ years of Remicade every 6 weeks I ended up with the most insane horrible migratory joint pain.  I thought I was going crazy because one day I could not move my hand, next day better but a foot, then a knee, then another hand, it was awful.  Almost felt like nerve pain where even moving at all started this shooting pain that took me over.  Remicade was stopped and I was immediately swapped to Humira.  I have been on a double dose for about 3 months now and it is not helping the Crohn's as much as the Remicade did.  I am so tired, 24/7 I just want to sleep and that is not like me at all.  I am also sore but since it's not the pain like I had on Remicade, I guess I really was not going to complain until I read this post!!!  My feet, ankles, knees and even my hips are just on fire all of the time.  Nothing I can't live with but it's definitely "there", I have been on B12 monthly injections for years now, doesn't seem to help but my numbers dip to nothing when I take it orally so I will continue that.  I am just constantly tired and sore.  I know this is an old post but I just wanted to say thanks anyway!!!!

_____

40 year old female

Diagnosed with CD ~7 years