HUMIRA: Hi everyone Can anyone out there who is on... - NRAS

NRAS

32,268 members39,478 posts

HUMIRA

LadyJan profile image

Hi everyone

Can anyone out there who is on Humira and has side effects let me know what they

are.I have just come off it - not sure if for good) but have suffered allsorts and really

want to know whether mine re related to:

I have not had any relief from it, in fact feel worse. Taken off of it because of cellulitis

and UTI's (side effects!!!!)

Not sure where I go from here but prefer pain to side effects I've been having.

Hope you are all going well

Ladyjan

12 Replies

Depression, anxiety, at one point I wanted to die! Off it for several months now, pain has now come back but able to cope with it until appointment in August! Good luck, wishing you all the best. X

LadyJan profile image
LadyJan in reply to gilox

Yup that's me, but added side effects too.

I'm off it whether rheumy likes it or not.

Ladyjan

How long after coming off did your depression take to leave? I hope the pain has stayed away for you...

The worst of it was over within a couple of weeks, but it took longer for the rest of it go, I was lucky in that I had good friends that could see I was struggling, I also crochet (a lot)! Two years on & back on methotrexate, feel better in myself, but still in pain.

Thank you for your reply. I’m so glad you feel better in yourself. The mental side effects are worse than the pain I think. My partner found most of the side effects left quite quickly and the mental effects have improved - but it’s now 6 months since stopping the drug, and he is still emotionally numb. When you say it took longer for the rest to go, how long - do you remember?

Hi,

I was taken off it due to side effects.....numerous chest and urine infections then ended up in hospital with chest pains and shortness of breath.

It's probably been the worst drug for me for side effects and I have been on quite a few biologics.

I'm now on Tofacitinib and thankfully, so far no problems.

Hi I’ve had side effects with 3 biologics, finally also on tofacitinib which works ( crossing fingers it lasts) and no side effects. Everyone has different responses to the medication and annoyingly it’s trial and error to find one that works for u. Hope u find one soon.

I just came off it as well. I felt depressed and my pain was worse with it than with Enbrel. I also just had a general feeling of being foggy in my thinking and just unwell all around. I’m on Simponi now—it’s probably called something else in the U.K. The first day after the shot was amazing but it has already diminished and I don’t get another till mid June. I know I must give it more time, but it is discouraging.

I hope you have better luck with your next one.

Thanks for that - just how I am feeling. Depressed, tearful and in pain. A lot of other

side effects too.Came off because of antibiotics and won't be going back on it. My decision!!

I'll let it get out of my system and maybe....try another...!

LadyJan

I understand completely why you have posted this question purely from my own experience.

Ive been very confused as to why this drug effected me the way it did and doctors have been practically useless in giving me any answers.

My consultant brushed me of twice even though I was complaining of serious psychological and physical problems he came out with some crap about it's the illness, his Big idea was to double the dosage to see if that helped 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 I really couldn't live in that state of mind any longer I was a complete psycho aggressive paranoid delusional crippled with anxiety burdened by deep dark depression that I couldn't snap out of.

I was in some form of psychosis some days I would argue with people in my head then believe that it was all real not just my imagination.

Sometimes out of nowhere I would think of something from years ago that upset me and this would trigger rage / anger and put me in a state of fight or flight.

I was forgetful to the point I couldn't remember peoples names I would even drive home to our previous address and not realize until I got out of the car. I went through a complete personality change my life became a living nightmare of uncontrollable emotional mental states.

Thank God it's over I couldn't bare to live like that again.

I had pains in places I had never had problems with before and to top this off even my eyesight was playing up.

Since stopping the drug ive been lucky in the fact that physically I seem to be far better off without it,

I'm running biking and I'm using the gym again 3 to 4 times a week.

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.

No more anti tnf for me thanks

If the pain or the colitis comes back I will make do with anything but biologicals they scare the life out of me.

Google humira anger , depression , anxiety , psychosis

You will find alot of people complaining of these issues we are far from alone.

LadyJan profile image
LadyJan in reply to Familyguy

Thank you Family guy. It was a relief to know some one else suffered from side effects .. I'm sorry tho that you had to go through it all.

My specialist was not listening this month, but did say none of my problems were humira related. He should look at the paperwork within the drug box.....it shows that there are endless side effects you COULD have, or not as the case maybe. I am having blood in my urine, clots as well. After the first time I was checked out with numerous tests which were all clear.

That was January. I am off humira since beginning of April NEVER to go back on again...and at this moment in time no biologics. A shame as so many are doing well on it, why not me!

Ladyjan

I’m so glad to hear you are better. How long after coming off the Humira did the mental side effects take to leave? My partner has been off for 6 months but is still suffering depression and emotional numbness - and everything online (and told to us by the doctors) says the drug should be out of his system therefore he should now be fine. Any information gratefully received. Many thanks.

You may also like...