My 18 year old son just started Humira for Ankylosing Spondylitis and believes that it may be causing him to feel excessively irritable. He’s trying to decide whether stay on it, hoping these issues subside or to switch medications.
Has anyone experienced mood swings and / or unexplained anger when taking Humira?
Question posted by cardinal12 on 24 March 2018
Last updated on 12 June 2023
10 Answers
Educated1
30 Sep 2021
Where do I begin? My husband has been on Humira for 15 years and 3 years ago the medicine began to fail in helping his RA pain. His very reliable Rheumatologist advised him to switch from monthly injections to twice monthly injections. Within 6 months I started noticing behavioral and mood changes which have turned our lives upside down. I never suspected the Humira as the cause, because he had been on it for so long. By a sheer stroke of luck I did some quick Google searches and stumbled across the biomedical journal articles. There has been evidence in the journal literature for years including the fields of Rheumatology, Psychiatry and Pharmacology that TNF (tumor necrosing agonists) such as Humira (Adalimumab) and Remicade (Infliximab) can cause sudden (acute) psychiatric illness. These articles can be found in PubMed searches or via Google searches. Call your nearest academic medical library if you cannot locate the articles online yourself.
As soon as I took these articles to my husband's Rheumatologist, he instructed him to stop the Humira immediately and said it was a known but considered rare side effect. I am certain that the change in dosing recommended three years ago caused all of these horrible mood and behavioral changes.
It is my sincere hope that this information is helpful to other people and their families in understanding what is happening to their loved ones.
It has truly been a frightening experience to say the least.
Citations:
1. Frontiers in Pharmacology, April 22, 2020. Vol 11 Article 513 "Psychiatric Adverse Events Associated with Infliximab: A Cohort Study from the French Nationwide Discharge Abstract Database."
2. Int J Psychiatry Med. 2016 Aug; 51 (6): 486-493 (Case Report) "Mania induced by adalimumab in a patient with ankylosing spondylitis"
3. Psychiatry and Clinical Neurosciences 2010; 64:442-445 "Induction of manic switch by the tumor necrosis factor-a antagonist infliximab."
4. Rheumatology 2008: 47: 1255-1256 (Letter to the Editor) "Acute psychosis in three patients receiving anti-tumour necrosis factor-a therapy
Educated1
25 May 2023
After approximately 17 months off Humira, my husband has suffered a hypomanic/manic cycle. Now I have unfortunate certainty that the double dosing of Humira caused him to develop bipolar illness. Is anyone interested in joining a Class Action Lawsuit?
ASMan52
10 Feb 2020
I’ve been using Humira for 6 months now. Cannot report irritability. Is he perhaps still in pain and irritable as a result, as he is expecting results from Humira? Continue NSAID while on Humira for at least 3 months in my experience.
Susan Elaine
7 Feb 2020
My husband has become a complete stranger. Once a very smart, considerate, energetic man, he has become emotionally detached, cruel, unpredictable, irrational, forgetful to just describe some of the changes. He admitted a few years ago that he felt the Humira was the cause but could not go off of the drug because the psoriasis would be back and that would be worse. It has gotten to the point that our once very strong marriage is now over. My heart is broken that this damn drug has destroyed this beautiful man.
Educated1
13 June 2023
My life and marriage have also been destroyed by my husband's doctor changing his dose to two injections of Humira per month instead of changing medications altogether. My husband now suffers from undiagnosed and untreated bipolar mania in his mid 50's. There is no warning in the drug inserts or from the prescribing doctors to be on the lookout for acute psychiatric illness. If I had been forewarned, I could have taken action sooner and perhaps changed the course of things. Now almost 5 years in, his Rheumatologist doesn't care that he has ruined two lives and a 27 year relationship.
pfrazier
18 July 2019
My husband has been taking Humira for his Crohns for about 7 months now. And, Yes, his personality and disposition have changed drastically. He is short tempered, unreasonably quick to anger, rage driven, with borderline depression. I can't recall the last time he smiled, was happy, or relaxed. He makes a mountain out of a molehill and is negative with everything and everyone around him. He is also greatly fatigued. I'm encouraging him to see his doctor because this isn't normal and can't be sustained... either for him or the fallout to me. These symptoms came on gradually after a difficult adjustment to the medication initially. It's great that the Humira, along with the 2 other medications he has to take, has greatly helped his Crohns but I'm not sure its worth the side effects. Hopefully there is another medication he can consider that will be easier on him.
I know that Humira does not acknowledge these symptoms as side effects, but with the number of online accounts of this problem I think they need to take a closer look at user feedback and investigate these extremely negative symptoms and at least caution potential users and their physicians.
Familyguydad
2 Aug 2019
Hi there
It's brilliant to see that you are supporting your husband this difficult time stick with him get him off of this drug and things will be back to normal within a few weeks.
I understand that you can see the changes in your husband the Big problem is that he won't be anywhere near as aware of these changes as you are his mind will be preoccupied fighting off fatigue depression anxiety and anger most of his mental effort will be focused just on coping with the stress of all of these mixed emotions and controlling them.
My experience with this drug is it's like being possessed this may sound over the top but it's the best way of explaining how this drug can effect you if you are susceptible.
Your husband will possibly be very protective of the drug as he thinks it's the only thing that can help him with his Crohn's symptoms so he's not going to give humira up without some sort of fight / protest.
My advice is that you speak to him try to make him more aware of the situation then arrange to go along with him to see his GP or better still his gastroenterologist / IBD specialist as the standard GP may just suggest an antidepressant as this option would be on the table but it's down to you both as to if you / your husband feels that this would help personalily I didn't like the antidepressant idea as I didn't want to go down that rabbit hole.
Your husband may just need a little reassurance that their are other drugs that he could try which should be just as effective or possibly better and without these God awful dangerous side effects.
To reassure you that you from personal experience that doctors do acknowledge these side effects when I told my gastroenterologist what was going on in my head he told me these psychological issues are very likely to be being caused by side effects of Humira.
The down side is that I explained everything months previously to my rheumatologist and he said it was the diesease and wanted to double the dosage luckily I myself and my partner thought it was worth trying missing a shot to see how I felt and I can tell you without any doubt in my mind I started to feel better by week 3 and by week 6 things were much better and from there onwards I never ever injected again now it's been well over a year.
I wish I had spoken to my gastroenterologist first it would have saved myself and my family so much worry as to what is happening.
I don't take any drugs to control my ankylosing spondylitis or my ulcerative colitis I have zero symptoms at all.
Since stopping humira my mental and physical health has gone from strength to strength.
I doubt your husband will be as lucky as myself with zero drugs but with a change of drug theirs a very good chance that he will be back to his old self in a matter of weeks.
Please keep us informed of where things go and the outcome of this awful situation.
I wish the best outcome possible for you both.
pfrazier
7 Feb 2020
I wanted to share this update after my prior post on how awful the Humira was on my husband's health. We spoke to his doctor who of course denied there was any connection to the medication. Geeze, there are so many people complaining about these devastating side effects but neither Humira or the doctors will acknowledge it. Anyway, the doctor did agree to change medication to the Entyvio infusions and my husband is tolerating them extremely well. It's inconvenient for him to go to the infusion center for treatments now in lieu of self administered Humira injections at home but well worth the outcome in the end. He's returned to his happy, stable former self without the rage, cruelty, depression, irresponsible and questionable decision-making, etc. that had become his normal behavior during the Humira time. Thank goodness no more Humira poison for him!! I hope that anyone else in this situation will stop the Humira and seek out alternative medications.
There are many to choose from that may work better without the life altering side effects. Good luck to each of you!
Robinj007
2 April 2019
Hi
I am 51 years old and been on Humira (adalimumab) for about 8 years. I relate to all these comments. I used to be a measured calm professional but of recent years i have a short fuse and very irritable.
I have raised this with my consultant but get easily dismissed. My family and friends notice it and i have to really check myself but getting annoyed easily. I'm using a life coach to try and stabilise myself but seriously considering dropping off the drug and taking the consequences. I'm arranging to see my consultant again and ask for a 2nd opinion. i'll update back when i know more.
Familyguydad
14 April 2019
My consultant brushed me of twice even though I was complaining off psychological and physical problems his Big idea was to double the dosage but myself and partner decided enough is enough it's time to take the gamble stop the drug see if things get better or worse.
I can tell you with 100% confidence it was the best decision of my life my sanity returned within a few weeks and all the pain stopped within 3 months.
Im left with dry fascial flaky skin a fungal infection in my toe nails and sinusitis but these now are slowly getting better rather than worse.
More importantly though I'm now back to my old self mentally and physically I'm far better off I'm running biking and I'm using the gym again.
I've gained muscle mass and lost the bloated belly humira caused and strangely I have zero symptoms of ulcerative colitis.
If I had listened to my consultant I'm pretty sure that I would either be clinically insane , seriously suicidal or worse.
My last injection was the best part of a year ago I've never taken any medication at all since stopping humira.
Get your to listen to you take notes as to what he says and check details of any letters as receive , my consultant even neglected to note any of the problems I reported I may aswell had been talking to myself.
Familyguydad
7 March 2019
If your son thinks that the drug is definitely the only plausible reason for irratible feelings then the chances are he is correct.
Look around the internet you will find alot of people complaining of psychological issues whilst being on humira.
Many Reports of extreme anxiety depression irrational behaviour extreme anger aggression personality disorders and some people even state that it's like an uncontrollable outside force taking over.
From my own experience of immense pain and psychological issues this drug caused I can only advise everyone be very careful.
For some people it works well but for others the physical and mental torcher this drug unleashes is just unbearable.
Read the side effects leaflet that comes in the box its as long as your arm.
Adamqum
5 May 2020
Hello did the symptoms go away on their own or you took something? I stopped Humira 4 months ago after taking it for 9 months and I am still suffering from the mental side effects that I never had before. Please anything will help
Adamqum
6 May 2020
Hi,
How long did it take for things to go back to normal? It’s taking me 4 months so far and no changes yet I am still suffering from all this. Please any information will help
carlbach
13 Aug 2018
i started humira 4 month's ago for crohn's and 2 month's into taking it , i experienced a lack of interest in anything i ever enjoyed doing, and avoided social activity. i guess you can call it some sort of depression. never in my life was i depressed and i'm a loud happy-go-lucky guy. it feels totally like an outside source causing it, and there's no logical reason why i feel the way i do. i'v been to psychiatrists and they say its probable its the humira. i stopped the humira 3 weeks ago and didn't feel any change yet. they say the side affects can take up to 110 days to wear off. i'm hoping for the best and your not alone! :)
Adamqum
5 May 2020
Hi. Did it get better? I have been off it for 4 months and still suffering. Did you take anything or do anything to make it better? Did you get back to normal?
Adamqum
6 May 2020
Hello,
Did you feel any change after? How long did it take? If no did you try anything for it to go away? And where did you get the info about the 110 days. Please help
carlbach
6 May 2020
I forgot where I saw the 110 days thing I probably googled it. Thank god im back to myself completely!!! It took a grueling 10 months to a year to get back to myself... it started getting better gradually 8 months after I discontinued humira. I tried a anxiety med. it didn’t help at all. You just have to try your hardest to keep positive!!
Adamqum
6 May 2020
Hi thank you for replying. Please is there a way I can talk to you or send you a msg somewhere it would really help. It’s only been 4 months and I can’t take it anymore.
Adamqum
6 May 2020
I sent you a private msg did you get it?
Adamqum
6 May 2020
I feel out of control I have been home for 4 months because I am scared and I don’t know what to do this started 9 months after Humira. Can you tell me if you did anything specific to help yourself? Doctors? I am taking Cymbalta now and it’s not helping. I can’t go on like for for another 6 months. Did you stop Humira at once or gradually?
I am sorry I am bothering you with all this but I am desperate and I don’t know what to do.
God bless you
Wishin2Bfishin
21 May 2018
I've only taken my first dose of Humira, but I thought I was losing my mind. The mood swings, depression, and anger are horrible. I'm calling my medical provider in the morning before this medicine wrecks my marriage
Agivens69
18 April 2018
I had my first injection 2 days ago for my RA and inverted psoriasis and the next day i was extremely depressed, isolated, irritable and not myself at all. I was crying most of the day. I suffer from depression and take prozac and it helps but not yesterday i felt like I could not escape the depression, isolation and irritability going on in my body. I was like what changed and the only thing is my doctor added Humira to my RA treatment. I can not continue being in this head space.
Keri90
4 April 2018
Hello I'm 25 and I have psoriasis and psoriatic arthritis. I was put on humira in January starter dose of 2 40ml injection then 40ml dose every other week. I noticed my mood changes within the first week after my starter dose. From then on it got worse and worse. I have been a different person. I can feel it but I can't control it. It's like I get mad over things I wouldn't have cared about last year and I can't let it go. I blow up at the smallest things and it's like I couldn't control it. I have been so mad at myself for being like this. It's almost a out of body experience. I know I'm being unreasonable and irrational but I can't stop myself. For the first few days after my injection I'm a feel like I'm happy almost over happy like I'm on top of the world but after those 3-4 days it's a downhill crash and I'm a total psycho.
Needless to say I took my last dose 3 weeks ago and im never taking it again. I can feel some of the anger going away but it's slow. I tell my doctors and they think it can't be from humira. But I know it has to be. I was happy before this venom I shot into myself. Sad because I havent had clear skin and such few joint flare ups since I was 19. They give this stuff out like candy but it's so much more serious as they lead us on to believe. I'm so sorry your son and you have to go through this. I hope everything turns out ok.
AlanBCardiff
27 Jan 2020
Keri90, Wow! You could have written this answer for me. Been on Humira now for almost two years. An amazing drug for PsA. For the first year I was taking this drug I was having the cycle that you describe. Inject every 2 weeks with 40mg.
Day 0 Injection in Evening
Day +1 High & Hyper
Day +2 about lunchtime (could almost set the clock ie 40hours after the injection) the start of a massive low and anxiety about stupid things like loosing the dogs ball... Never had that before
Day +3 Down but improving...
Day +4 Back to normal.
Now I tend to control it better but it is still there in the background but less pronounced. These side effects are not listed on the information sheet. The consultant didn’t have any answers but my GP (local doctor for normal health) had definitely heard of a link and even offered me some meds if I needed them.
I don’t take any meds for anxiety etc - just work it through and was allowed to work from home when really bad.
Why??? Is it a psychological effect due to having a chronic illness. Humira does work so taking the injection will make me feel high as I know I will be good for 2 weeks but then it dawns on me that I do have PsA. I was a long time without meds and I was bad - couldn’t move... for weeks. Really don’t know but 2 things for sure: PsA is well under control & the up/down cycle has been dampened out after a year or so.
Adamqum
5 May 2020
How long till you went back to normal after stopping because I stopped 4 months ago and still suffering the mental side effects
cardinal12
6 May 2020
Adamqum, my son’s mood swings got better pretty quickly after going off of Humira. I can’t remember how long it took. Maybe 6-8 weeks? He is still quite irritable, but this seems to have more to do with feeling sick and hurting all the time. The intense Humira rages did go away. I hope they do for you too.
Adamqum
6 May 2020
Thank you I hope so too. God bless you
Related topics
humira, ankylosing spondylitis, anger, mood swing, spondyloarthritis
Further information
- Humira uses and safety info
- Humira prescribing info & package insert (for Health Professionals)
- Side effects of Humira (detailed)
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