Anyone stopped humira on their own accord?

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Regular Member

Date Joined Aug 2011
Total Posts : 299
   Posted 10/20/2011 4:03 PM (GMT -7)   
So I had my barium xrays, not had a follow up yet, but the lady who took all the xrays said to her it all looked pretty normal.
So i should be happy right? ha..

Silly but i was hoping something minor that would explain all my problems would show up, but no lol.

It was also humira night tonight and id almost convinced myself not to take it and too wait and see what happens but in reality this is a ridiculous time to get sick, if this drug is doing its job!
but the website says to stop taking the medication and see a doctor, if you have upper abdo pain that goes to your shoulders, light headedness, loss of appetite, shortness of breath, joint pain muscle aches so on and so on. but those are the serious ones im experiencing and have been for months now. ive told 2 doctors and my ibd nurse and i just feel like no one is doing anything to find out why or prevent these side effects!
Wouldnt mind so much if it wasnt disrupting my life so much im literally living on a mixture of cocodamol and tramadol but it wont be long before i run out of both of those too

What my doctors do not know yet is that my next appointment on the 11th is my last, im moving to america at the end of november, i literally have my fingers crossed that this is my blessing in disguise that i will find a doctor that knows how to help!!

anyway massssiive rant over!!
Main purpose was to see how many people had just stopped humira and carried on with their other meds, how long theyd been on humira and how theyd got on?

Regular Member

Date Joined Aug 2011
Total Posts : 299
   Posted 10/20/2011 4:17 PM (GMT -7)   
Ive seriously tried my doctors not having it every time i bring it up its 'no lets see if its this causing the problem' or 'lets do this scan' and i cannot seem to get them to agree with me. I have been on remicade, i loved it - worked wonders for me but i developed anti bodies to that, n ever since i started this humira i have felt worse and worse, i think its safe to say im stuck between a rock and a hard place. i mean i do not want to feel like this, its not fair to be living this quality of life but i also do not want a flare up.

I dont think im going to stop taking it any time too soon, ill have one last time talking to the nurse and ill just have to take it from there. Was just interested in others experiences so i could make a more educated decision.
20 years old - female
Crohns dx 2009
Azathioprine 150mg, Asacol 3200mg, Ferrous gluconate 600mg, Humira bi weekly
Developed anti-bodies to infliximab.

Regular Member

Date Joined May 2011
Total Posts : 331
   Posted 10/20/2011 4:23 PM (GMT -7)   
I have a bunch of Humira pens left over in my fridge.

I stopped about 8 weeks ago. I'm doing alright.

You shouldn't stop unless you are taking something else that works and have discussed about this with your GI thoroughly.

I'm currently on a different therapy along with LDN and definitely feels good. Not much fatigue.

But I'm ready to go back on the meds if I flare the next time. I'm sort of acting like a guinea pig with my protocol.
21 male
Pancolitis 2008 Jan. then Dxed Crohn's colitis later
Multiple strictures in 2010

Only on Beck's Protocol and LDN

Quit all medications including, Pentasa, Humira, Entocort and 6mp and Prednisone

Jog 2miles daily
Melatonin/Vitamin D/DMSO/Iodoral/AL Acid/Ultimate Flora/Manuka honey
No HFSC, sugar,msg

Veteran Member

Date Joined Jun 2010
Total Posts : 1542
   Posted 10/20/2011 5:15 PM (GMT -7)   
The risk of build up with anitbodies for Remicade and Humira are a lot different. Remicade has mouse protein and once you stop you are at high risk for building up antibodies. Humira is human protein and the chance of antibodies still exists but is a lot lower with Humira than Remicade.

I have previously been on Remicade and Humira. In September when my doctor thought I needed to restart a biologic she said absolutely no to remicade that the risk of complications was too high. But that the risk was low for Humira and thought it was a good option to restart.

I restarted Humira with no problems. When I stopped both Remicade and Humira previously it was with doctor guidance. I am not sure I would stop it cold turkey without having another gameplan with your doctor.
Diagnosed with Crohn's in 1998, father has UC we were both diagnosed at 20 yrs old. Diagnosis changed to UC Sept 2011

Meds ~ Proctofoam, 10 mg Prednisone, biweekly Humira
Supps ~ Fish Oil, folic acid, D3, K2, B-complex vitamin.

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 10/20/2011 8:26 PM (GMT -7)   
I understand the feeling of not wanting to take meds, but I have been on 6mp and Remincaide in the past and Humira now - the 6mp never worked, but I was kept on it for a couple years because the high doses of Prenisone my doctor would prescribe would calm the flare then keep it at bay for a few months until I would repeat the cycle. FINALLY they realized it wasn't working and put me on Remicaide, which I hated because it made me feel like I was "sick" even when I was well and in remission because getting the IV infusion every 8 weeks surrounded by people with all stages of Crohn's & Colitis was a reminder of this weird full-of-potential-side-effects drug they were putting in me. Then Remicaide stopped working. I was sick for a long time but didn't have all the rapid onset because I was doing so many other things right. But I eventually got very sick and was like a walking zombie. I had to convince the dr to to a colonoscopy and he finally realized it was the Remicaide. I don't like taking Humira but I get scared to think of what would happen if it stopped working.
But I do believe that everyone has the right to make their own decisions about their health. Welcome to America! :)
Crohn's Colitis
35 year old female
DX 2006
Currently on Humira, Xanax for anxiety, multivitamins, extra Vit D and calcium
In the past have taken 6mp, Prednisone and Remicaide

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 10/21/2011 12:08 AM (GMT -7)   
Hi I would not stop humira until you talk to your doctor.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.

Regular Member

Date Joined Jul 2009
Total Posts : 142
   Posted 10/21/2011 3:19 AM (GMT -7)   
I can't tell you if you should or shouldn't go off it...I can tell you what happened to me when I got the "bright Idea" to go off it.  I have Crohn's Colitis...I have only ever had colon symptoms and the god awful arthitis that goes with it.  Since the arthritis is reactive and the humira was keeping the Crohn's in remission, I thought that maybe if I went back on asacol I could stay in remission.  Asacol helped the Crohns in the past but never got me in remission. 
I was trying to avoid some of the side effects from the Humira. I get random nausea from it plus some skin issues and well the fact that it slows recovery time from things like cuts and muscle sorness from working out was getting to me. If I exercise it takes 4 or 5 days to recover as opposed to the 1 to 2 days in the past.  By the time I had skipped the second dose no more nausea and the skin issues cleared up.  By the day before I was due for the third dose I was in the bathroom 7 or 8 times a day and I hurt in my lower abdomen alot!  I lost 5 pounds in one week.  So guess what I am back on...Colon is back to good and the nausea is back but it's not as bad as the pain and disruption from the Crohns...I was starting to get the stiffness from the arthritis also...I have appts with the Dermatoligist and the Reumy guy next week, so I can add something else for the skin and nausea...
It drives me crazy because now they will add two more things to my regimine to combact the side effects of the humira....It's depressing..

Regular Member

Date Joined Aug 2011
Total Posts : 299
   Posted 10/21/2011 4:44 AM (GMT -7)   
Thanks everyone, like I said I have tried to discuss this with a dr many times before and they're not listening, when I came out of hospital this summer it was high doses of azathioprine and Asacol that helped me recover and I stayed on just that for roughly a month as I had to wait before I received humira
I don't really suffer the typical effects of crohns such as D unless I'm in a pretty rough flare n I've never really felt more than a few cramps of nausea whilst on the mess either until now, just seems such a shame something that potentially could be working can be so horrible if I could happily say this is better than a flare I would stick at it without moaning but the aches the pains the fatigue and everything else thy goes with it is typically worse than previous flares I have had, it's a difficult one to be honest and with moving so close ahead seems a silly time to be trying without any guidance so I'm not making any rash decisions was just looking for experience and alternatives.

Thanks for all replies it is appreciated!

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 10/21/2011 8:03 AM (GMT -7)   
I stopped Humira in July after being on it for 6 months. I developed horrendous joint pain, not the actual joints but the soft tissue around the joints and when I saw my GI in July said pain was getting worse and he could see how bad it was as could hardly walk or move even though was taking tramadol and co-codamol for the pain. He really wanted me to stay on the Humira for 2 years but I had restarted azathioprine which has always kept the CD in remission previously and said I wanted to stoo Humira and continue with just azathioprine. He agreed that the obvious development of the joint pain meant the negative outwayed the positive and so I had my last injection beginning of July, next one was due day I saw GI and so didn't take it and haven't had any since. Still in remission and unfortunately the pain is now a permanent fixture and being tested for nerve damage, Lupus, MCTD, polymyositis and now on 15mg oxycodone 4 times a day, 300mg gabapentin 3 times a day and 30mg amitriptyline at night.

Whilst the doctors may have their opinions it comes down to how you feel on the medication. For me it has caused much more problems than it solved as the azathioprine does the job just as well and the Humira has done nothing for the stricture as it is from scar tissue not inflammation. Talk to your GI about the pros and cons of stopping or continuing and then take some time to decide.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

New Member

Date Joined Sep 2016
Total Posts : 2
   Posted 9/12/2016 6:37 AM (GMT -7)   
I was on remicade for 5 years and it stopped working. Then my dr put me on Humira. I was on it for 5 years and it had me in remission. But I had a bad sinus infection and a really bad ear infection that wouldn't go away with multiple antibiotics and many trips to the dr and a specialist. So after having this ongoing ear infection for 4 months and nothing was healing it, I thought to myself what if I stop my Humira and see if that will help my ear heal. So I stopped my Humira cold turkey, without talking to my dr first and I haven't been on anything else since. It's been two years and I've been doing great. My dr says as long as I'm doing ok he doesn't want to put me on anything.

Veteran Member

Date Joined Jun 2006
Total Posts : 909
   Posted 9/12/2016 9:45 AM (GMT -7)   
I quit Remicade after two years because I saw minimal benefit, lots of side effects, and was starting to build up antibodies. My GI would have wanted me to keep going a few more infusions to see if the antibodies continued to build, but I was done.

The stupid thing I did next was not start up a new treatment (outside of a couple weeks of suppositories since I had primary inflammation in the rectum at that time). I was completely off Crohn's meds for over a year and am now flaring again and talking about going back on biologics (Humira will likely be the next one I try). This isn't the first time I have thought I'd be fine with no maintenance meds, but hopefully it's the last. I'm stubborn though.

The fact that Humira is easier to get back on after stopping (vs. Remicade) would make me more willing to try an alternate treatment. But, all biologics have side effects so you might be trading one for another. And there are only so many biologics, so you really have to weigh how much your current treatment is working vs. side effects, complications, etc.
30s F. Crohn's ileocolitis dx 2/06. Arthritis dx9/09. Asthma dx4/13. Raynaud's. Chronic headaches/migraines.
Current IBD treatment (as of Aug16): Entocort & Pentasa. Past: Remicade
On Botox regimen for migraines.

Regular Member

Date Joined Oct 2011
Total Posts : 39
   Posted 9/13/2016 4:32 AM (GMT -7)   
Hello there......yes, I have stopped the Humira on my own with my doc's knowledge of course! I was on it for a year and developed sebborrheic dermatitis!! Along with fungal toe nails. I was insistant that it was the Humira!! So in April I stopped the Humira and was just using Pentasa. I was OK until about a month ago when the Crohn's reared it's ugly head at the TI where my issues persist.

So I started prednisone which took away my skin issues fancy that!! If I had only known sooner, but I've also restarted the Humira so now it's a waiting game to see what happens next. Will the skin issues persist?? Is it the Humira?? I just don't know anymore and it's frustrating!! Oh well, I keep trying as we all do!!


New Member

Date Joined Oct 2011
Total Posts : 2
   Posted 10/22/2017 7:14 PM (GMT -7)   
I have stopped Humira on my own twice...the first time after a couple of years and then continual infections that I was unable to get under control with antibiotic after antibiotic after antibiotic, steroids, etc. The infections stopped. I was able to go without it for about 3-4 years before the Crohn's and joint pain became too much to live with. My doc suggested I try it again. I have now been back on it for a couple years, but again, a series of serious infections, 3 rounds of high-powered antibiotics, a round of steroids & a steroid shot has left me with a WAYYYY lowered immune system from the Humira and now no good bacteria to fight off the bad because it was all killed by the antibiotics & other drugs...sigh... So, I haven't taken but one dose in 2 months...I took that one because I thought the infection was under control...started with kidney uti then moved to sinus, ears, congestion...had I stayed on the Humira, I would still be suffering infections and who knows where I'd have ended up..I went to see an iridologist...he knew everything that was going on with me without my mentioning it...I am now on several tinctures and things to get my immune system back under control...after that is in control, then I'll go from there. The side effects this time from stopping Humira...itching on palms and bottoms of feet are driving me's been nearly 2 months & still the itching, although the welting, burning and turning red of my hands and feet have lessened...still the itching continues.
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