Humira Fatigue

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3peppers
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/11/2008 9:21 PM (GMT -7)   
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.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/11/2008 9:25 PM (GMT -7)   
YES!!! It's terrible, isn't it?

I daren't tell many people about it because I have no alternative but to be on the drug, but it's hard to manage the side effects.

Was yours worse at any time of day? Most mornings I stagger around, too groggy to function. If I'm lucky it will start to lift at about 2pm, but a lot of the time it doesn't lift until 5, or at all.
Co-Moderator Crohn's Forum.


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 11/11/2008 9:25 PM (GMT -7)   
ps. Welcome!
Co-Moderator Crohn's Forum.


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 11/11/2008 9:32 PM (GMT -7)   
Eek..not the news I had been wanting to hear. Just started Humira almost two weeks ago and was VERY pleasantly surprised to find no side effects thus far (I had very immediate side effects with Remicade). I think it's even helped me get down from sleeping 10-11 hrs/night to around 8 (which is still a TON for a college student)...but maybe that's just a placebo effect. I brought the possibility of my fatigue worsening on Humira and my GI insisted the opposite would happen.

Sorry to hear, peppers and Ivy!
20 y/o, diagnosed 6/2007. On Humira, no wheat or corn syrup, low sugar, low dairy.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/11/2008 9:36 PM (GMT -7)   
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.
Co-Moderator Crohn's Forum.


Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 11/12/2008 2:38 AM (GMT -7)   

OMG!!!!    I tooo had the worst fatigue of my life!!!!     In fact, I decided that its not the way I want to live....      As of Friday I am OFF humira (I talked it over with doc)  

Now the Humira did do wonders for my chrons....   But for me, I didnt want to sleep my life away.

I am soooo glad I found your post!   I am not loosing it, there are others out there with the same effect!


28 Yrs
Michigan
Newly diagnosed with Crohns


xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 11/12/2008 6:54 AM (GMT -7)   
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.

3peppers
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/12/2008 8:01 AM (GMT -7)   

Thank you, Thank you, Thank you!  I can't believe you brought up the feet!  I didn't want to whine too much in my first post, so I didn't mention that fact.  I stagger around like I'm walking on broken ankles anytime I first get up.  Then, once I've been on my feet for a minute or so I can look normal but if I verbalized the experience of walking it would be: ow, ow, ow, ow, ow, ow, ow.  They feel bruised.  It affects my hands somewhat also.  I've been told it's enteropathic arthritis, fybromyalgia, etc.

And I also have to agree with the lack of energy before 2:00pm.  I get my son up and off to school in the mornings, and then I'm basically out of commission until the afternoon.  I just thought it was because I knew I had to get moving and appear somewhat normal for him, sort of a mind over matter thing, but I really do have more energy after say 5 in the evening.  Problem is, by then I'm so behind on everything I'm overwhelmed.

However, I do have to say that I am doing much better 2+ months after stopping the Humira.  I've caught up on some errant errands and actually had a few dates with my hubby!  The feet though are still a problem.  I realize that life without meds is not a long term solution (I have less than 188cm small bowel left - I need to keep it), so I'm researching Cimzia.  Would love opinions on this new med if anyone has any.

***One other thing - Humira did help me for a long time, and I'm thankful for it.  My docs agree that I would be TPN today without it.  Anyone considering meds needs to realize that many side effects never bother most people, but there are risks with any drug.  You need to listen to your body and your intuition, but don't throw hope out the window over what might happen.
 
This is a great forum - it's wonderful to be able to verify I'm not as loony as my docs think.

Azstrait
Regular Member


Date Joined Dec 2005
Total Posts : 259
   Posted 11/12/2008 9:26 AM (GMT -7)   
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.
42 yrs, diagnosed Crohn's 1988, 2 bowel resections, 1 strictureplasty, 1 botched exploratory surgery, 1 emergency surgery for ruptured ulcer, Remicade every 8 wks, Immuran 100 mg, Protonix


3peppers
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/12/2008 1:46 PM (GMT -7)   
I'm sorry to hear you're having such problems with the Cimzia. Hopefully it will all calm down for you with time. I haven't been on Remicade for quite awhile (had an allergic reaction to the 2nd and 3rd doses), but I've noticed that my veins are not what they used to be - a dramatic difference in getting IV in or blood out from 5 years ago (I'm 44). I wonder if it has something to do with all the meds??

Good call on postponing surgery on your feet - my son sees a podiatrist for malformed tendons in his feet, and he may be conservative, but this podiatrist says that surgery on the feet should be an absolute last resort. And congrats on making to the gym! I know that it must take monumental effort, don't forget to give yourself credit.

Azstrait
Regular Member


Date Joined Dec 2005
Total Posts : 259
   Posted 11/12/2008 2:25 PM (GMT -7)   
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.
42 yrs, diagnosed Crohn's 1988, 2 bowel resections, 1 strictureplasty, 1 botched exploratory surgery, 1 emergency surgery for ruptured ulcer, Remicade every 8 wks, Immuran 100 mg, Protonix


Curly9878
Regular Member


Date Joined Apr 2007
Total Posts : 165
   Posted 11/12/2008 4:46 PM (GMT -7)   
HOLY CRAP!!!!!!    I posted how I too had bad fatigue...   Well I ALSO have the foot pain!!!!!   I think we are on to something here people!!!!     I can always walk if off but it just hurts when I first stand....  
28 Yrs
Michigan
Newly diagnosed with Crohns


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/12/2008 6:36 PM (GMT -7)   
I think checking your ANA might be a good idea.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


3peppers
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/12/2008 8:12 PM (GMT -7)   
It can't be coincidence that there are "so many" people with such very similar pain, and it's certainly not normal. Doctors love their science, so seeminly random symptoms among a patient here and there are easily filed away as "caused by something else." In fact, my Crohn's was misdiagnosed for 7 years because I didn't seem to fit the profile.

Thanks for the clue to the ANA. I'll definitely get it checked - 15 years ago it was elevated to a point to be concerned about, but it was during my pregnancy and seemed to resolve after that.

mania
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 9/6/2011 7:42 PM (GMT -7)   
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

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 9/6/2011 7:47 PM (GMT -7)   
i've been taking humira for approx 6 months now...i have extreme fatigue at times, but i had it prior to the humira so i can't conclusively tie the two together...the fatigue is insane though...i'm talking almost falling asleep driving etc...not good at all!
37 year old male living in AZ. Diagnosed with Crohns at age of 15.
Currently on 20 mg prednisone. still taking Asacol. Done with Remicade- antibody level was over 8! Waiting for scope results to see about Humira or Cimzia.
In the middle of a bad flare now for 2 years...it's been one heck of a ride!

novice
Regular Member


Date Joined Aug 2011
Total Posts : 299
   Posted 9/7/2011 4:00 AM (GMT -7)   
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!
20 years old - female
Crohns dx 2009
Azathioprine 150mg, Asacol 3200mg, Ferrous gluconate 600mg, Humira bi weekly
Developed anti-bodies to infliximab.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/7/2011 6:21 AM (GMT -7)   
Do you guys realize this is a 3 year old post????
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, Folic Acid and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

batgirl100
New Member


Date Joined Jan 2015
Total Posts : 1
   Posted 1/9/2015 8:30 AM (GMT -7)   
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
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