Humira side affects

[crohnsdad]

Hello everyone,

I am new to this site.

My daughter has been on Humira for a week now with some side affects not listed on the doctors lists, just wondering if anyone else has had anything similar.

My daughter is severly disabled and doesn't walk or talk so it is difficult to tell how she is feeling, but below is how we think she is feeling.

Severe aggitation, almost like she can't calm down and like she wants to crawl out of her own skin.

Anyone who has had similar side affects please let me know because it feels like the doctors don't believe us.

Thanks,
Bob

 

[Lucy]

Hello Bob and welcome. Could the Humira be mixing with any other meds she is on that could be causing this? I would go to that docs office every day if need be to get my point across to him/her. Don't back down you know your daughter better than anyone and keep telling them until they listen. I hope your daughter starts doing better. Please keep us updated on her progress. I'm on Humira and have had no ill side effects. Find a new GI if your not happy with the one you currently have. Best of Luck. Hope you stick around.

 

[Crohns08]

I'm on humira as well but I've only had my first four shots. I've had the headaches and flu like symptoms. Aggitation and irritability can be part of our disease while we are ill, but I would still consult the doctor about it to be on the safe side. Good luck and keep us posted!

 

[CDDad]

Hi Bob,
My heart goes out to you and your daughter. Kids should not have to deal with this terrible disease.
I'm on Humira and have never had symptoms like that. But, everyone is different and react differently to drugs. If you're sure it's the Humira doing that, you might have to determine if the negatives outweigh the positives and discontinue it.

I also had my colon out, and so far, it's like a cure for me. But, as you know, my Crohn's could come back any time somewhere else. Hense the continuing Humira.

Best of luck to you and a hug for you Madsion.

 

[glum chump]

Hi Bob:

I'm so sorry that your daughter is going through such a rough time, and for you, it must be so difficult witnessing her pain.

I did not experience those particular side effects while I was on Humira. My side effects were weight gain and skin lesions, but like you, my doctor didn't believe that it was caused by Humira. So I started doing my own research and found myself on a website called askapatient.com, a website where people who have experience with a drug right down their side effects, etc. If I remember correctly, some people had similar effects as you're describing for your daughter. You might want to check the website out. There were certainly people who had the same experience as me, and I was able to show my doctor this in order for them to back down and take my symptoms more seriously.

Good luck to you, and sending you lots of good wishes in your dealings with your doctor.

 

[crohnsdad]

Thanks to all of you, there are some great suggestions I will follow through and keep you updated.

Thanks again,

Bob

 

[strat1163]

dont take humira

Please whatever you do DO NOT take HUMIRA or an other drug that reduces your immune function. I took Humira for approx one year and I now am so ill and regret taking it. I now have to contend with whatever this drug did to me on top on my arthritis. Before I decided to take it I consulted with my dr and she stated that the risks involved were hype and that it was safe to take. Yes, it worked to reduce my joint inflammation for that year but it was not worth the price to pay.

Back in April 09 when I was on the drug for 9 months, I had developed severe shortness of breath and unable to walk. The cat scan showed no infection but I continued to get increasing worse. Within months I developed severe diarrhea, bloating, tender abdomen, and continued labored breathing. I struggled with this until January 2010, when I began coughing up chunky green colored phlegm and it was cultured and turned out that I contracted Klebsiella pnemonia and was very ill and had it the entire time. I was put on an antibiotic for this and was given numerous amounts of antibiotics. I felt somewhat better for a few weeks and then back to feeling sicker than ever with awful headaches, sinusitis, productive cough and back on more meds. I continued to struggle with GI issues and it was found that I had a dead gallbladder from the humira and it was removed in June 2010. The surgery helped with the GI issues but around this time I began to have awful headaches and bloody noses along with nasal discharge. In dec 2010 I was doing my daily nasal irrigation and I heard a "pop" and tilted my head and had about a cup of blood, pus and skin drop into the sink. Immediately I had a searing pain in my face that would shoot into my neck and I was in agony. Went to ENT a few days later and he stated that it was most likely a cyst and gave me pain killers. I continued to have massive pain and around jan 2010, I developed painful mouth sores on same side as the supposed cyst and my dentist said that I had an abscessed tooth so he pulled the tooth and my condition got worse. I developed swollen gums on that side along with a bigger painful sore that oozed pus. I am now awaiting a biopsy result. Basically, all of my drs just shrug and act clueless as to what to do bc of all the crap that has been going on medically since taking humira. My Rheumy, PCP, ENT, and infectious doc all have basically been pawing me off and telling me to go to a different doctor. This has been a nightmare that I cant wake up from.

This entire time I have barely able to work, to be a dad to my children, and a husband to my wife because of that toxic s$#t of a medication. The thing is that not many doctors know the real risks of taking this med. and they just brush you off. I know in my heart that this medication has ruined my health beyond repair and I am just waiting for the next disease to crop up. What? more infections, cancer. Trust me if I could go back in time I would. Please dont take any of the Anti-TNF drugs; spread the word about these deadly drugs.

 

[beth]

Emotive posts like that above really annoy the hell out of me. We all know that these powerful medications have side effects, some can be nasty and life threatening, that's why they are prescribed by consultants, not your average family GP, or off the shelf pharmacist.
Telling people not to take them is not useful, what are your medical qualifications to give such advice to people you don't know, never met, never interviewed, or know their medical history?

Personally I'd take medical advice, not some random perp on the internet.

 

[My Butt Hurts]

Please whatever you do DO NOT take HUMIRA or an other drug that reduces your immune function.

That's a very bold and risky statement.
I think it's fine to tell your story, and what may or may not have happened to you because of your meds but to deter others from a potentially life saving treatment is wrong.

I was a walking skeleton before starting Humira and do not regret one second of being on it. I got my life back taking Humira, then moved to Remicade when it stopped working.
As Crohn's patients, our immune systems are overactive as it is. An immunosuppressant does not mean "now you have no immune system". It can even it out to a normal level.

Some people on this forum have had terrible side effects from Prednisone, but to say "OH MY GOD YOU SHOULD NEVER TAKE PREDNISONE EVER!" is irresponsible. It's been a life saver for many others.

Edit - to answer the original question. I didn't have any side effects at all, but I was only on it for a short time before it stopped working. 4 1/2 months.

 

[nolesgirl14]

I was on humira for only a short while before it stopped appearing to work. When I stopped taking it, my body freaked out and had a terrible reaction. It literally looked like i sprained my ankle due to how swollen it was. I had a lot of aches and pains to the point where I couldn't get out of bed. I had headaches, fatigue, and lost a lot of weight. I am a college student, so this was VERY difficult. Sometimes I just wish this disease would disappear...

 

[CrohnsNYC]

Sorry but I find the post above (DO NOT TAKE HUMIRA) very annoying. I just started Humira this week and I am completely confident that this will finally get me better. Every drug has side effects and everyone reacts differently. To make a blanketed statement to everyone not to take a potentially lifesaving (or at least a quality of life improving) drug seems very irresponsible. I am not sure anyone is qualified here to make those statements without knowing the person, their specific disease symptoms, history, etc. I have complete faith in my GI and Rheumatologist, who both think this is the best option for me. I am very hopeful that Humira works and gets me back into remission.

To nolesgirl14 - it really sounds like what happened to your ankle is erythema nodosum. Before I was diagnosed in 2009 I had exactly what you are describing. I thought I broke my ankle and didn’t know it. It was so swollen, black and blue and I couldn't walk. It was the worst pain I had ever felt. I ended up needed a strong round of prednisone to get it under control. Thankfully it has not returned. Just thought I would mention it. Hope you feel better!

 

[Crohn'sFor Life]

Humira

I am hoping that Humira will help me to get off Prednisone. I seem to be corticosteroid dependant. A year and a half of high steroid use has screwed up my body big time.

 

[ameslouise]

Bob, hope you're daughter's feeling better and please don't let that alarmist's post scare you. Humira has done a lot of good for a lot of people. While it hasn't really helped me, I haven't had any side effects either.

- Amy

 

[jaycee]

I am starting Humira this week and I am some what concerned about reactions and side effects, but those concerns, for me, pale in comparison with how poorly I currently feel and the long term effects the prednisone.

Jamie

 

[Mark63]

Hi Bob,

I really feel for you and your daughter.

I've been using Humira for 6 months now and the only side effects that I've noted are:
1. Itchy skin that starts-up some time between 2 and 4 days after the injection and tends to go on for a week or so. Taking 180mg of Fexofenadine once a day helps a great deal.
2. Very prone to pick up colds or other bugs.

Mark

 

[DougUte]

Despite the alarmist post above... I am excited to finally get on a med that might actually work on my Crohn's. My GI has again prescribed Humira. My insurance denied coverage last November because I had "not tried enough cheaper treatments" Hopefully, with my failed 2 month attempt on sulfasalzine will be enough to get to Humira. I have had fistulas and a resection. You would think my Crohn's would be considered severe enough.

 

[outlier]

I am sorry your daughter has to deal with this.

I have gotten bad migraines from humira. Before I realized what was going on. I would describe me as being generally agitated. I have decide that I will stay on it for awhile longer because i have had more good then not.

 

[MikeinBklyn]

Bob, firstly, I am very sorry to hear about your daughter, and I pray things get better.

For me the only reaction has been an occasional bout of "flu like symptoms" that go away after a few days, a small price to pay for all the benefits I have received from Humira.

Good Luck to you.

 

[CDDad]

I'm a good "control" subject because I'm a Crohn's symptom free person still taking Humira. My last surgery wiped out any signs of my Crohn's. But my doc still wants me to take Humira to ward off problems in the future. I was also taking Humira when I was pretty sick, with no results, except feeling lousy.

I've been back on it for a few months now with zero side effects. It just makes me wonder if Crohn's itself is responsible for many side effects we attribute to some drugs.

But my shot yesterday did hurt like heck.

 

[tonys_girl_090810]

hi i am new on here but i have had crohns for 8 years and i am only 27years old. i have had 3 surgerys and all kinds of different meds i am currently on humira and it is doing me good i have been on it for a little over a year and i have not had any bad side afects it does make me sick if i dont eat frist and it makes me tired. but it works on people in different ways. i only have 10% of my colen left so it might make a differnce with that as well but i read some one had said something about other meds she could be on and that is possable it does not mix well to gether. i was on remaicd for a wile and it did not mix with the other meds i was taking. i swelled and could not breath or see when i had a reation to it and some dr just dont like to lession to people when it comes to the meds you are taking. iam soo sorry that your little girl has crohns it is very painful.

 

[Stevenwritenow]

I joined the site just to answer/comment on this or everyone's benefit. Humira has "agitation" listed as a known SE. I know this because I looked it up. I looked it up because I could metaphorically put my fist through a wall right now. I won't though.

You see, it hasn't made me nuts just really, really irritable.

You still have your control it just needs to work harder.

Enjoy!

 

[JLL from SC]

I have been on Humira for two and a half months now and have noticed little or no apparant improvement in my Crohn's symptoms. My only noticeable side effect seems to be a soreness in the sholder and neck area with associated difficulty falling and staying asleep at night. I suppose that could broadly fall under the "agitation" that is listed in the literature. Anyone else experiencing these symptoms?

 

[Kfil]

I just recieved my loading dose of humira.. So far day 2 horrible headache. Is this normal???

 

[ronroush7]

I have been on Humira for two and a half months now and have noticed little or no apparant improvement in my Crohn's symptoms. My only noticeable side effect seems to be a soreness in the sholder and neck area with associated difficulty falling and staying asleep at night. I suppose that could broadly fall under the "agitation" that is listed in the literature. Anyone else experiencing these symptoms?

I have read at least one person where it took fiour months before it started working. I hope it works for you soon.