Humira Reviews

Humira antibody

Monoclonal antibody targeting TNF Alpha

Humira

With the recent approval of Humira (Adalimumab) by the FDA, there is a growing need for ulcerative colitis patient reviews of their experiences with this medication.  Like some other biologics, Humira helps to stop the communication of a specific part of the immune system’s inflammatory response.

Many UC’ers are concerned that immune suppresants such as Humira will stop their immune system from working.  That is not entirely true. Humira’s main goal is to stop the TNF alpha section of the immune response.  (if humira stopped everything in our immune systems from working…it would be game over for everyone real quick)

Although Humira was approved by the FDA much later than Remicade which is a similar immune suppressant medication, there has been research and studies with Humira as far back as 1999 when it was still under development.

Like all medications, doctors should be consulted considerably when the decisions are being made to potentially start medications.  Humira is no different.  There are many reported potential side effects, and you as a patient should be well aware of what these are.

If you have experience with taking Humira for treating your ulcerative colitis, please consider leaving a review on this page of your experience.

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Humira immune suppressant and anti TNF alpha medication for treating auto immune disease such as ulcerative colitis SKU UPC Model

humira made symptoms worst!

Jan 14, 2014 by judy r
Country & City: Usa ny 

Diagnosed 6 years ago with UC. Took every medication prescribed. Have colonoscopy every 6 months. Taking humira 4 months now. Symptoms are so bad, that I am bowel and bladder incontinent. Pull-ups are the most vital part of my wardrobe! the pain and diarrhea are unbearable. my doctor is trying everything. I am scared to eat! my tush is beat up! I just need to feel well. I am depressed and irritable all the time.


It's very complicated

Aug 04, 2013 by Foo Fighter
Country & City: Australia 

I was diagnosed with UC 17 or 18 years ago. Initially treated with prednisolone enemas, corticosteroids and sulfalazine, all of which were already a bit old-fashioned, with known serious side-effects, to be seriously considered as a long-term treatment. Saw no relief over two years

Then switched to another doctor who put me on to aziathiaprine (Imuran) and Salofalk granules (mesalazine), my first immunosuppressants. Things improved very slightly, but still no remission for another 7 or 8 years.

Over the years my diagnosis changed from UC to Crohn's Colitis, to (maybe, I think) Crohn's Disease. It's not clear, and different doctors tend to hand wave around the distinction between them in my experience.

Then was put on anti-depressants (Zoloft, an SSRI), which caused complications. I was jumping through hoops at this point, trying to get put on to infliximab (Remicade), such as going back on corticosteroids to prove to my new doctor that they didn't work before he could advocate for me to receive Remicade through the public health system. As serotonin is involved in signalling for blood coagulation, the SSRIs caused massive bleeding. I had always had bleeding and urgency, with several visits to the toilet per day, but now I was incontinent with blood and had to start using sanitary napkins (I'm a man) and had to come off the SSRIs. Complications ensued and I ended up becoming paraplegic.

Being partly paralysed mostly ended the bowel spasms (ie urgency) associated with UC, along with all sensation in that area. By then I had given all but decaf coffee entirely, but occasionally would get funny feelings across my skin and would feel the need to twitch and stretch, especially after caffeine (a few times people spiked my coffee for a laugh, so I know). I'm quite sure this is how the bowel spasms manifest themselves after the damage to my nervous system. In other words, I still get some nervous system response to caffeine, but the sense of urgency is gone as I have very little feeling left in that area. Nevertheless, by that stage I was getting those funny skin feelings fairly regularly, even without caffeine -- that is, I think that I was getting this new, strange manifestation of bowel spasms fairly regularly.

I still had bloody diarrhoea, which is particularly hard to manage in combination with a paralysed detrusor reflex.

At this point I started an 18 month treatment with Humira. I don't recall any noticeable side-effects, though I may have had subtle things like tiredness or worse mood which I didn't associate with it; certainly people seem to have had very bad experiences with it. Over those 18 months stools improved to become pretty normal, and funny skin sensations (bowel spasms) mostly disappeared, so it seemed to have a positive effect.

I remained on mesalazine & immurane throughout the Humira program and for another 18 months. All together it's hard to know how useful the Humira has been, as my nervous system damage complicates the observations.

I became concerned that being on immunosuppressants for so long was causing me to become intolerant of certain foods. Any remotely "challenging" foods to my body -- ie caffeine, sugar, alcohol -- now result in me feeling what I can only describe as very badly hung over the next day, even after only a small dose. Because of my suspicions, I managed to get off the Imuran, seemingly without any problems.

Also, shortly before getting off the Imuran I had started taking a quarter-teaspoon of baking soda (sodium bicarbonate) in water in the morning and night. This is because I came across a paper in a journal of medical hypotheses which corralled a bunch of medical correlations to argue that Crohn's Disease is a consequence of the body's inability to digest the cell walls gram-negative bacteria properly. Intestinal alkaline phosphotase (IAP) is apparently an enzyme necessary to digest these cell walls properly, but which doesn't operate well in an environment that's too acidic. Thus, the author suggested that a sufficiently alkaline diet might help ease Crohn's Disease. To this end, I continue to take small doses of baking soda, which is alkaline, and it seems to positively influence stool consistency, something which my absent detrusor reflex makes very easy to notice.

I recommend trying to see if baking soda alleviates symptoms a bit, and certainly quitting caffeine. I can't recommend paralysis as a solution to bowel spasms ;-)


Jul 23, 2013 by Crystal
Country & City: Champlin, MN. 

Humira has to be one of the worst medications I have taken for my UC. I developed Autoimmune Hepatitis from Humira and now have to be a slave to labs every two weeks, monitoring my liver, hoping that it will go away and stay gone. Not enough research has been done on this drug to know if the Autoimmune Hepatitis will remain a chronic condition, or go away now that I have stopped the medication. Be VERY cautious when taking Humira, and listen to your body - I was told that there was less than a 2% chance of having any liver problems, and look what happened to me. Be your own/best advocate especially when doctors won't listen to you.


I hate it as much as prednisone

Jul 23, 2013 by Joanna
Country & City: Bethel park, pa 

After my excruciating loading dose, i developed frozen joints and c diff after a day. I did not know humira could cause c diff or else i really doubt i wouldve taken it. Been struggling with that for the entire year since my loading dose in january. I only took that first day of doses- only three of the four because i fainted from the pain of the shots. I couldnt bare to take the last one. Definitely something i regret taking. I always hate seeing those untrue commercials of the happy humira patients because i have a feeling there is a way larger amount of unhappy humira patients.


The "gift" that keeps giving!

Jul 22, 2013 by Shelly Miller
Country & City: Maine 

After becoming allergic to remicade and hitting another severe flare and waiting weeks for approval...I think it did stop the bleeding despite being allergic to it the whole time(6 months)-I experienced lots of rahes, numbness, tingling, chest pain-even had to have heart stress test, nerve pain, my body is forever changed because of it.
I hope it works for others, but read all you can so you know what to expect for side effects and make an informed decision.


so far so good

Jul 22, 2013 by Jennifer
Country & City: GA 

i have been on humira for approx 1 month now. not showing any vast improvement nor am i showing any major problems shown below (however i'm also noticing its around the 3-4 month mark where ppl seem to have difficulties). i will say my urgency has increased. i have about 15-20 second window before ill shit myself, and usually dont make it about 3x per week. take ty3 for pain (it slows my gut down too).
haven't had any lesions or fevers yet, however had to stop the 6MP immediately due to staph infection on my ankle WBC was 2 and hemoglobin was 7.8 (this was before humira though).

ive been a lot worse, but definitely wont accept this to be "normal". i have UC pancolitis and have tried all the sulfa and mesa drugs, canasa, rowasa, remcaid, uceris, apriso, asacol, etc. will update in another 2 months to see if i have any of the bad reactions around the same time period. hoping not... hoping this drug kicks in. dont have any options left other than surgery...


Too much too handle!

Jul 22, 2013 by Violet Sterba
Country & City: Washington 

I do not like Humira period. It has made me miserable since starting it. I was diagnosed two years ago with UC and have been uncontrollable. Put on Humira 4 months ago and I have been sicker with everything else since. Had a 2 week long cold. Than had a nasty fungal infection that lasted two weeks in my mouth, basically thrush combined with multiple canker sores. Couldn’t eat without Vicodin. After a week into fungal infection, my sinuses flared and ended up with a 4 week long sinus infection. First 2 weeks was self care, finally broke down and went on antibiotics when I spiked a 103 temp and couldn’t move off my couch. Couldn’t get any air up my nose, nor could I get a sinus rinse to go up. Than the bumps started. Yes, I looked like a spotted leopard on my arms and legs. Erythema nodosum is what they call it. I have giant red patches all over my arms and legs that are hot, painful and sometimes itchy. My ankle is the size of a softball, literally no thanks to the bump on my tendon swelling. I could barely walk at one point the pain in my ankle was do severe. Back on Vicodin I went as well as a 2 antibiotic because the other antibiotic wasn’t working as well so I got to get a stronger one. Sinuses are clear now, start of week 5 but my spots are just as horrible. I’ve asked to be taken off Humira – denied. They actually want to increase my injections!!! Now I’m being referred to the University of WA to see their specialists. I have basically stopped all meds except for prednisone and I feel better. I felt worse on all the meds with no UC results. I think I’m going to hit this with diet now. I’m tired of the meds and broke cause I take so many. Humira may work for some but it’s been a horrible experience for me!


Nope Nope Nope.

Jul 22, 2013 by Geof

have had UC proctitis since summer 2010 – Average 6-10 BM’s a day, pain between 5-9 every day,

I have tried near every medication and diet except remicade, nothing works and most of it makes me miserable.

after detoxing from 6mp for several months after it crashed my immune system and put me in the hospital with a 104 fever for a week they finally put me on humira.

very bad decision.

I was on it for 3 months at my doctors request, and every day forward after starting in mid march was a spiraling loss of control. A constant daily sever shooting level 10/10 pain in the upper left side of my abdomen, it felt like I was constantly being stabbed. bowel movements 15-20 times a day with a 10 second urgency to shitting myself response (it was so bad i couldnt sleep)and diet did nothing. weight gain was around 10 lbs. loss of the will to leave the house, to eat anything, or to even live became a constant depressing mantra.

I stuck it out in may due to my gi clinic’s request, but it was like inducing torture to inject up… and i would not have lasted another 2 weeks at that rate. I quit taking injections mid may, and suddenly the clouds parted, and the first week i felt 10 % better, the next week 20% better, and so on and so on.

if that was a “light reaction” anything more would have been criminal.

it is now July 22 I am on Zero medications other than vicodin and occasional prednisone for when i have to leave the house… which is rare because this disease has ruined my life and humiliated me past the point of no return. but anyways… I feel 100% better after being on humira and 60% of normal, bm’s settling down to 6-10 a day depending on diet which takes me out of the colostomy territory.


Did not work for me

Jul 22, 2013 by 
Country & City: Menlo Park, California USA 

I decided (along with my GI) to attempt Humira as a treatment after failing with Remicade and 5-ASA's and sulfasalazine, and prednisone and rowasa enemas.

Long story short is it gave me severe skin lessions to my hands, scalp, feet, and legs.

Along with this, joint pain increased to a level I'd never known was possible.

Within a few rounds of the injections, the decision was made to stop.

(just my experience, and I'm hoping that some people with UC have had great results with Humira, just didn't work for me)


1.8 4.0 9 9 Diagnosed 6 years ago with UC. Took every medication prescribed. Have colonoscopy every 6 months. Taking humira 4 months now. Symptoms are so bad, that I am bowel and bladder incon Humira

16 Responses to “Humira Reviews”

  1. Jennifer ZwingleJuly 22, 2013 at 12:24 pm #

    I was on Hunira, key word was. I had an allergic reaction like none other. I lost about 8 days of time as after the 2nd part of the loading dose I went into an awake coma state. I had pain throughout my entire body, so bad I needed help standing up off of the toilet. My mind was scattered and I had no conception if time. This was the end of this January and I missed things like the Super Bowl and my mothers birthday because in my mind it was Christmas. I was talking in my sleep and basically in a state of delirium.

  2. bevJuly 22, 2013 at 1:48 pm #

    This is a great idea to review humira from people who have taken it. Not from a pharmaceutical point of view, but from a HUMAN one!

    Yey Adam!

  3. Reid B. KimballJuly 22, 2013 at 4:09 pm #

    Adam, do you know about RxISK.org? They are encouraging patients to write about their side effect experiences with Humira. https://www.rxisk.org/Research/DrugInformation.aspx?DrugID=4835&ProductDrugID=45825&ProductName=Humira

    They also have a campaign I am helping with to raise awareness that the drug makers of Humira have NOT released all of their clinical study data. http://davidhealy.org/abbvie/

    • AdamJuly 22, 2013 at 4:46 pm #

      What up Reid!
      Great to hear from you (everybody, check out Reid’s website crohnsend.com if you have not already)

      No, i have not heard of the stuff you mentioned, but it for sure does not surprise me. But again, and although I lean on the non western end of things for treating UC, I’m still hoping that there’s lots of people reading here who have had positive experiences.
      Best to you amigo:)

  4. Dean BJuly 23, 2013 at 12:28 pm #

    I have been on Humira for 6 months now. I was on Remicade for about 2 years. I have been doing real
    good. As far as the going to the bath room it has made me about as normal as I have been in years.
    I am noticing some joint pains that I didn’t have before. I just had blood work done and it shows
    my blood platelets are low. Another plus for me is the cost of the Humira. I was going broke fast on
    Remicade. I can afford Humira but if my blood platelets stay low I may have to go back to Remicade.

  5. SharonJuly 27, 2013 at 4:56 am #

    I started on Humira in June of 2012. I cannot take any ASA drugs and the prednisone, VSL#3DS combo wasn’t kicking my flare. I have 4 kids and I could not take care of anyone or even myself. I told my doctor I did not want to be sick all the time on an immunosuppressant, didn’t want the side effects, had almost died from Lialda, etc. He very kindly told me I was about as sick as I could be in the state I was in. I would be back in the hospital within days with very few options for meds. I took my loading dose, upped my pred and saw results within 2 days. I went into remission quickly and never looked back. I had swelling and itching at the injection site every time but otherwise, no side effects. After about 9 months, the pharmacy had multiple screw ups and I missed my dose by a week. Shortly after, I started to flare. We did re-boosting loads and I continued in a mild flare until I finally called my GI and asked for 20 mg of prednisone to get over the hump. It worked. When I first started Humira, I had agreed with my doctor that I would take it for 6 months to a year. If I stayed in remission, He wanted me to come off of it. When I flared, he decided I should stay on the Humira. I decided differently. I haven’t had an injection since June 5th. I started to feel a flare coming on but took L-glutemide, Astaxanthin, iron, protein powder, and high doses of VSL#3 DS. Flare averted :) I feel great right now.

    I hope to stay off of the Humira and other heavy hitter drugs for as long as possible but if I had no other choice, I am glad Humira is an option.

  6. JonnyJuly 27, 2013 at 6:44 pm #

    I was first diagnosed with UC in 1996 and was in remission up until 2011. After a couple of rounds of prednisone (which only provided temporary relief) I was put on Humira in March this year and I am starting to see an improvement now after over 4 months. The urgency has decreased and I am starting to go ‘regularly’ within an hour of waking up. I have also eliminated gluten and raw fruits and veg and take a probiotic before bed – perhaps the diet is making the difference or Humira – either way things are vastly improved. No side effects from Humira other than a slight rash at the injection site the day after… I put something frozen over the area before taking the injection which really helps. So my experience has been positive, I take the injection once every 2 weeks – I also take a multivitamin since I stick to a high protein diet with minimal fruit and veg. Good luck to those taking / considering Humira!

  7. DanAugust 23, 2013 at 4:14 am #

    I started Humira 10 weeks ago and I am now in hospital. When I started it I was in a flare.I lost 7 kgs and needed two units of blood along with two units of potassium followed by infusion of Iron. I found when starting Humira it caused me to pass water through my bowel which never happened before since diagnosis late 2011.Im convinced it made me worse.Waiting in hospital now to star remicade today if that doesnt work im off for an OP.Fingers Crossed no op .Trial and error for UC, humira might work for you.Best of luck to all.Dan, Ireland

  8. Matthew AdairSeptember 25, 2013 at 7:14 pm #

    I want anybody that has had these side effects to please let me know on my website email address please.
    Sick the whole time on Humira, 6 months I took it, Lost all the skin on my legs and my fingernails rotted off lasted 14 months until I found something that worked to help, it’s not totally gone away yet. Now my RA levels are so high my primary care doc says I shouldn’t be able to walk, I’ve lost the ability to use my hands and pain is terrible, I have numbness in my arms and legs, and bone pain, I’m having neurological issues not yet seen the doc for these, and now have drug induced Lupus and not sure what all is being attacked, Every day I get up I have to see how bad it is before I can do anything or what might be new. Please let me know if you’ve had these types of things happening to you. I know others, Adam had a couple of things I’ve had and that’s how I found the wonderful site. Please Please Please let me know, at either email address.
    Thanks Matt.

    • Matthew AdairSeptember 25, 2013 at 8:08 pm #

      lookwhathumiradidtome@gmail.com

    • bevSeptember 26, 2013 at 6:24 am #

      Omg…and these drugs are supposed to be taken by humans???

    • Byron GillespieOctober 17, 2013 at 11:59 am #

      Hi Mat, I to am suffering from strange lupus like problems from the humira, after having two sets of loading doses I started to suffer from severe pain in my feet and knees, this after 13 months is continuing but soon after the other symptoms started it now affects my shoulders , ribs and lower back, and strange rashes , severe fatigue.
      I had been on a humira trial 4years ago and had no real side affects then, but this time things started to happen straight away so I refused to have any more humira injections but the joint/bone /tendon pain remains, now I take lots of heavy pain killers just to hobble about and sleep.
      After 13 months it is still affecting me and my doctors here in Nottingham, England do not known what is causing these affects or how to treat me, I have been referred to a rheumatologist who also does not know what to do.
      I am also on the usual crohn,s drugs while also I have just been put on methotrexate recently , 9 weeks ago but this has not changed anything yet.
      Do you have any experience with any treatments that have helped you or anyone else , I would love to hear from you and anyone else that is going through this hell.
      Your sincerely
      Byron

  9. Tony NettoNovember 11, 2013 at 1:30 pm #

    I’ve been on Humira for 3 months. Could wrap up in a fetal position almost anytime and take a nap. Tired all the time. Aches/pains in my feet, shoulders and generally just not feeling well. Not sure I’ll continue. In remission, but was in remission almost 2 weeks before starting Humira, so I can’t really tell. I have frequency returning (4-6 times daily – few times more, few times less) and urgency also. Would like to “pop” 20 mg of prednisone to see if it would take hold of this colitus. I was on prednisone for about 3 weeks after starting and that period was good. Then the pain, which in part, I’m sure was from tapering off prednisone, but thats 6 weeks ago. I don’t think I’m going to re-fill px. But done want to stop without discussing with Doc first.

  10. josephinefarrowNovember 25, 2013 at 12:51 am #

    I’m on humira 5 months now and suffer from all the above mentioned symptoms. I find vitamin d helps a lot. The worst side effect for me was and is massive hair loss. Caffiene shampoo helps, wish I had found it earlier. #crohns

  11. Denise K.December 3, 2013 at 9:14 am #

    Hi Adam,
    I was just reading all the responses above. I was diagnosed with pancolitis in July 2010 and have done all the different meds except for Remicad or Humira. Really didn’t want to try those two drugs and did not like the side effects. Have tried all the others, asacol, lialda prednisone, etc. but with no help. Until I went to an Internist and she prescribed cholestyramine-4 G per scoop 4 gram powder, Commonly known as: QUESTRAN. No side effects with this drug. I was taking 4X daily but down to 2X daily and off all other meds. This is a wonder drug used for older people to control their bowls.

    • AdamDecember 3, 2013 at 9:20 am #

      Hi Denise,

      Sounds like you’ve found a great thing that’s working for yourself! I myself have never heard of that before, but that’s super awesome you’re seeing good results! Thanks so much for sharing!

      -Adam

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