• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Why isn't Fatigue Listed as a Side Effect for Humira?

Have you experienced fatigue while taking Humira?

  • No never

    Votes: 5 7.7%
  • Not sure

    Votes: 5 7.7%
  • Yes a little

    Votes: 30 46.2%
  • YES and its EXTREME

    Votes: 25 38.5%

  • Total voters
    65

Jennifer

Adminstrator
Staff member
Location
SLO
WHY? I've seen a few people on the forum mention it and I've definitely noticed it during my loading doses which went away after my next couple of doses but is now back full force. Why isn't it listed as a possible side effect? Maybe it doesn't matter I suppose but it seems common enough to be at least mentioned.

With the poll it doesn't mean that you're constantly tired all the way up until the next injection but maybe the day of or day after or just for a few days or one day you might feel tired. As in have you ever felt tired or noticed any change at all in that department?
 
I know what sort of post-dose fatigue you're talking about cause I used to get it with methotrexate. I've never had it all with Humira though. I guess it's different for everyone. I'm curious to see how the poll turns out.
 

Jennifer

Adminstrator
Staff member
Location
SLO
One more person says its extreme.

Yeah my fatigue does eventually go away but when it hits me I can barely function so that's why I voted "extreme."
 
After i have my injection i feel extremely tired for a few days - i had my last injection on monday, and i slept all day tuesday and most of wednesday. I still feel a little tired now too >.<
 

Jennifer

Adminstrator
Staff member
Location
SLO
That's 5 people so far who do feel tired after injections. Now let us assume that most people do actually get tired. Why do you guys think its not listed as a side effect?
 

rygon

Moderator
Is it because they cannot distinguish between fatigue which we normally get and what could be caused by the drug. I know when I have remicade I feel tired the rest of the day (whether its from the drug or sitting on my ass for hours I do not know)
 

Jennifer

Adminstrator
Staff member
Location
SLO
It feels different. You can definitely feel that its drug induced. It comes on sudden no matter what you're doing and can continue to hang around for days (or just hours for some people possibly). For me I can barely keep my eyes open when its happening. Almost similar to being put to sleep before a procedure. To me that seems pretty significant to the point where it should be listed as a possible side effect.
 
Seems like for me I get tired a few hours after I inject, so I lay down for a little while, or I will inject a few hours before I go to bed, and that seems to help with the fatigue.
 

Jennifer

Adminstrator
Staff member
Location
SLO
I inject at night too (not because I knew it would make me sleepy though, I take all my meds before bed). Thing is it makes me tired for a few days. :/
 
My problem is that I stay tired all the time. The fatigue never goes away. I've only had two injections but each time I've been extremely nauseous, dizzy and EXTREMLY tired! Nut like I said my fatigue never goes away and starting to impact my every day life.
 

Jennifer

Adminstrator
Staff member
Location
SLO
TeenageStephanie like you I had the same problem after my first couple of injections but since it hasn't been as bad. My third injection didn't make me tired at all yet my fourth did. Since then I only get tired for a couple days at most. It was very noticeable in the beginning though. As far as the dizziness and nausea go I'd definitely talk to your doctor about that if that's as constant and affecting your daily life as well as the fatigue. Hopefully those will all go away but its always best that your GI knows about it.
 
I had to take up acupuncture to reduce fatigue. Life is stressfull, but the medication seems to accelerate the fatigue.
 
Location
Australia
Definite fatigue the next day.
I'm actually getting used to it now.
Had a dose yesterday. Was meant to play golf today. There was no way I could walk 9 holes - so we went to the driving range instead.
But the fatigue is very clearly related to the Humira.
 
fatigue is listed in the side effects.

"tell your doctor as soon as possible if you notice any of the following:
  • feeling weak or tired;
 

Jennifer

Adminstrator
Staff member
Location
SLO
fatigue is listed in the side effects.

"tell your doctor as soon as possible if you notice any of the following:
  • feeling weak or tired;
Not in the way it should be heisenberg. Unless you're getting your info from somewhere special that I don't know about (please site source). I've checked multiple sites online, the bible page thin leaflet that turns into a poster which comes with Humira and Humira's website.

On the Bible page thin leaflet it says:
"If you are a carrier of the hepatitis B virus, the virus can become active while you use Humira." The it lists, "feel very tired" along with other symptoms, as a possible side effect if you have hepatitis B.

Then you go down to Liver Problems:
"Liver problems can happen in people who use TNF-blocker medicines. These problems can lead to liver failure and death." Then it lists, "feel very tired" along with other symptoms, yet again.

On the Humira website it says:
"Remember, tell your doctor right away if you have an infection or symptoms of an infection, including: Feeling very tired" http://www.humira.com/

So does it really list it as a possible side effect to the general public? No. Its for infections and liver problems and hepatitis B. So everyone who answered yes in the poll has one of these three issues above? No. I believe its a common side effect from Humira itself not me and everyone else having some other health issue like Humira's drug info suggests.
 
I agree with the observation of extreme fatigue. I slept 10-12 hours a night with Humira, and had joint and body aches often.
 
I am curios if this was every time you inject or was it only during the loading phase?
It was during the entire duration of me taking it. After the injections, I would feel knocked out and sleep 12 hours. I cant really describe the other feeling I got when injected, kind of like "seeing stars"

Remicade also caused me significant exhaustion, and it was much harder to take as car as the body aches and pains. It didn't help that I had to take steroids and benedryl as prep.
 
After i have my injection i feel extremely tired for a few days - i had my last injection on monday, and i slept all day tuesday and most of wednesday. I still feel a little tired now too >.<
Hi Crabby- how have you been? Did you get your MRI. Thanks for the advice with that, I saw a diff gp, got a referral and had one. Thankfully all good.

Anyway- the quote above- I have this some days too. Where I could just rest/sleep all day. So I voted sometimes. Not sure if its a side effect like you clearly feel its only due to that, but a lot of people on here, say they get regular fatigue with crohns anyway. My symptoms improved heaps on humira, but I still have D, and that alone can be draining, and dehydrating. Anyway, I'm not sure why they don't list it as a possible side effect, but what does it matter? If it helps your crohns, that's all that really matters, unless side effects are unbearable. That's just my opinion, but if yours are terrible, I've read you've been on remix ads too. Is it the same for you on that. I remember always wanting to just lay down for two days after an infusion. So who knows, maybe for some and not for others it is a definite side effect. xo
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi Irene3. I'm not sure what MRI you're referring to, I've had some recently for joint pain and numbness issues. Waiting on the results as my Neurologist retired and my appointment with a new one isn't until mid Dec. D:

I'm no longer taking Humira as it was constantly making me have an upper resp cold that wouldn't go away. Working on switching to Remicade, just waiting for the insurance to approve it. I'll probably be put in Asacol and Entocort again until its approved. Had scopes done today and see my GI again next week on the 20th to talk about the game plan.
 
Hi crabby, ye you said months ago that it was for your joints and numbness and it was hard to get a referral at first. Anyway, sorry to hear about humira. How do you go on entocort? Is it worth it? It's 300 per month here in AU but apparently has a lot less side effects, and does wonders for crohns. If I flare badly, I plan to at least try it if that's the case. Hopefully not for 2-4 years thanks to humira. And I meant remicade in the post above (auto correct). Did you feel extreme fatigue on that?
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hey Irene3, I take Entocort instead of Prednisone all the time. It doesn't work as fast but still has great results with very few (I personally never had any) side effects especially when compared to Prednisone. Prednisone messes with my heart beat too much and I already have an irregular one. My cardiologist doesn't want me on it and since I do well with it my GI always prescribes it. Its also really good for joint pain, made mine go away completely while on it. I haven't taken the Remicade yet.
 
Not in the way it should be heisenberg. Unless you're getting your info from somewhere special that I don't know about (please site source). I've checked multiple sites online, the bible page thin leaflet that turns into a poster which comes with Humira and Humira's website.

On the Bible page thin leaflet it says:
"If you are a carrier of the hepatitis B virus, the virus can become active while you use Humira." The it lists, "feel very tired" along with other symptoms, as a possible side effect if you have hepatitis B.

Then you go down to Liver Problems:
"Liver problems can happen in people who use TNF-blocker medicines. These problems can lead to liver failure and death." Then it lists, "feel very tired" along with other symptoms, yet again.

On the Humira website it says:
"Remember, tell your doctor right away if you have an infection or symptoms of an infection, including: Feeling very tired" http://www.humira.com/

So does it really list it as a possible side effect to the general public? No. Its for infections and liver problems and hepatitis B. So everyone who answered yes in the poll has one of these three issues above? No. I believe its a common side effect from Humira itself not me and everyone else having some other health issue like Humira's drug info suggests.


No, it lists it as a specific symptom which, I quote "can be signs of the below listed side effects which have been observed with humira". This is in the booklet which comes with the medicine (UK). Listed under 4. POSSIBLE SIDE EFFECTS

I think this is actually a case of the intricacies of how side effects are required to be listed in these medical information booklets (and what the difference between a symptom or a side effect actually is). Tiredness is a symptom rather than a side effect so it is listed as such in the book (whereas something like having a reaction at the injection site is a side effect).

This is why it is listed as a symptom - because it could well be a sign that you have illness elsewhere in your body and thus need to be checked by your doctor to make sure nothing is wrong. If it was listed as a side effect then most people would just ignore it and put it down to the medication.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Heisenberg, "listed side effects" and "POSSIBLE SIDE EFFECTS" are side effects, not symptoms. Symptoms for medications aren't listed. They are called side effects. It may list symptoms of other health problems sure, but that's not a side effect of Humira, that's a possible symptom of a more serious condition. I also don't believe that people would simply brush off the fatigue either. It is quite debilitating.

Now I checked the Humira website and the giant bible thin leaflet again and there are no "symptoms" of Humira listed because that would be a side effect, just symptoms of other health conditions which I posted above.

I don't know what you're reading in the UK but here in the USA it is not listed as a side effect. Not anywhere. Even if it were listed a a possible serious side effect I'd be happy because then it leaves it open to being a side effect from Humira but could also be a sign of a more serious condition (like an infection or cancer etc). But they wont even do that much. So how are people even supposed to know that fatigue could mean that they have a more serious condition? You really think everyone reads the entire leaflet? Most people look straight at the side effects list and try to watch out for those, hence why fatigue should be listed.

Since making this thread I stopped taking Humira (will be switching to Remicade) and the debilitating fatigue I experienced has gone away. In my case the fatigue was a side effect.
 
Sorry to bump such an old thread but I wanted to toss in some results I've been having.
each time I take a dose of Humira I find myself sleeping very large amount more.
4x doses: Slept about 16 hours. 2x doses: slept about 18 hours and both of those left after a day or two. But after my most recent and first only 1x dose I took on the 14th I've gone to sleep at 8pm and awoken at 10-11am each morning. Ordinarily my brain clock would wake me at about 6am. Hopefully this goes away in a day or two as I start work again on Sunday for the 5AM-5PM shifts. If not, someones probably gonna have to nudge me awake while I sit at my desk hah!
 
Hi jennifer. Saw this post from last year. I have extreme fatigue after Humira injections but not every time. I am wondering why this is so, doe sthis mean that in some pens the humira is defective?. Also wondering if I should discontinue Humira because of this. The fatigue is quite debilitating and last for 3 or 4 days after an injection.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Even though I sent this to you in a PM Hawwa, I'm posting it here as well for the benefit of others.

How long have you been on Humira?

From my own personal experience the fatigue would come and go. I don't believe this means that the pens are defective, I think that our bodies are gradually getting used to it. I only took Humira for a few months because it started to cause constant upper respiratory infections (which is why I stopped it). I do recall it making me really tired for a few days at a time though and it was debilitating but the fatigue did start getting less and less and I think if I had stayed on it longer it may have gone away or at least be less severe as time went on.

If you've been on it for a while and the fatigue is still extreme then it may be a good idea to talk to your doctor about switching to something else like Remicade or Cimzia (both are biologics like Humira). When I took Remicade I didn't get the extreme fatigue that Humira caused (I did get tired during the infusion and the rest of the day but nowhere near as bad as when I was on Humira).

In my opinion, if the side effects are causing more harm than the disease itself then it may be best to switch to something else. Hope this helps. :)
 

DustyKat

Super Moderator
It is listed as a side effect in the consumer leaflet that is included with medication in Australia Crabby:

It is deemed one of the more common side effects...

Tell your doctor if you notice any of the following:

* Injection site reactions (including pain, swelling, redness or itching)
* Upper respiratory tract infections (including cold, runny nose, sinus infection, sore throat)
* Lower respiratory tract infections (such as bronchitis, pneumonia)
* Headache, dizziness, vertigo, sensation disorders
* Increased cough, sore throat
* Abdominal symptoms such as: nausea, diarrhoea, abdominal pain
* Rash, itching
* Fatigue
* Mouth inflammation and ulcers
* Elevated liver enzymes
* Musculoskeletal pain
* Viral infections (including influenza, cold sore blisters, chicken pox and shingles)
* Bacterial infections (including Urinary Tract Infection)
* Fungal Infections

These are the more common side effects of Humira.

http://www.nps.org.au/__data/assets/pdf_file/0020/13376/abchumir.pdf
Dusty. xxx
 
Thanks Dusty, I know fatigue can be a side effect, but I was concerned because I had stopped being fatigued after injections, and now after 5 months of use, I am getting the extreme fatigue again.
 

DustyKat

Super Moderator
I should add that these leaflets are not produced by the manufacturer but by the NPS which is an independent organisation that is funded by the Department of Health and Ageing.

It's aim is to..."Give health professionals and consumers access to information and other supports for good prescribing and decisions about medicines and medical test use."

These leaflets are included in the packaging when we obtain prescribed medication.

Dusty. :)
 

Jennifer

Adminstrator
Staff member
Location
SLO
That's nice of Australia to do that. :p It wasn't listed on the leaflets I got. At most it was mentioned as possibly having another health problem which was addressed on the first page of this thread. http://www.crohnsforum.com/showpost.php?p=518093&postcount=18

Hawwa, be sure to talk to your doctor about it because fatigue could be sign of another health problem which Humira can cause. So best to rule anything out.
 

DustyKat

Super Moderator
Thanks Dusty, I know fatigue can be a side effect, but I was concerned because I had stopped being fatigued after injections, and now after 5 months of use, I am getting the extreme fatigue again.
Sorry Hawwa, I picked up on the thread title. :redface:
 
I have been on humira over two years. The entire time I have had what I consider serve fatigue. I just want to sleep all the time. I have never actually thought it might be connected to the humira I just thought it must be a crohns thing. I have been telling my doctor for ages I have it they finally ran some tests and found I am b12 deficiant. I started my b12 shots two weeks ago and began to feel less fatigue but when I took my humira shot last week ive been feeling super tired all day again. So I am thinking that maybe you are right.
 
I starting taking Humira and i have to take AT LEAST a 3 hour nap when i get off work which is super part time like 4 hour shifts. I feel like a zombie the rest of the day. It is driving me insane. about to stop humira just to see how i feel after.
 
Interesting!
I don't have any side effects from Humira and I'm now on weekly as it wasn't helping the Crohn's either.
I am tired but no more than usual, if anything I'm less tired in he last few weeks which coincides with having less D. I'm really hopeful things will stay this way when I go back to fortnightly shots in a few weeks.

For a while though, I was thinking that no side effects had a correlation with it not working. My trough levels were tested and they were below minimum, hence going weekly. Hopefully I was wrong and it can work without side effects!
 
I have been on Humira for almost about 10 months. I simply feel exhausted all of the time. I can't remember the last time I tried to watch a show or read a book at night without falling asleep. I'm so glad it's not just me. I was beginning to wonder what is wrong with me!
 
I've only started Humira was previously on Methotrexate, after first double dose of Humira I slept for two days-I'd say that is extrem fatigue! And two days ago I took my second dose and again slept for two days. And I have been sleeping in until noon or later which is so not like me. I have insomnia..or did? Where I would stay up for days and feel great now I am always tired. I have also had sinus congestion nonstop. Could that also be caused by Humira?
Thank you so much for posting, I thought I was imagining the connection!
 
Top