Humira in Ulcerative Colitis

July, 29, 2013 | 60 Comments


  1. I was in the original clinical trial of Humira. Originally, I did not know if I was receiving the placebo or Humira. I got sicker and sicker and they just kicked me out of the trial. They claimed that I didn’t want to participate any longer. I’m sure that Abbot Labs just didn’t want anything negative about their money making product. A few years later when Humira was approved,my gastroenterologist wanted to put me on it. At that point, I requested the clinical trial doctor to inform me whether I had the placebo or not. The answer was that I had Humira. I wonder how many other people with adverse effects were kicked out of the trial.

  2. David, I don’t know if there was a clinical trial with Thalidomide.

    But, all the those poor little babies born with no arms and legs – it was disgusting.
    It was only somewhat recently this was addressed, in a typical lazy and years-later fashion and I think I am right when these people got some com-pen-say-shun.

    Typically disgusting is the way a very few, like Thalidomide babies, either lost their lives to ssris or even took other lives or even ended up in prison because of ssris.

    Today, in the usual press, I read a piece about Thalidomide.

    ‘Safe’ Thalidomide Hopes

    Scots scientists are exploring the use of Thalidomide as a treatment for cancer, HIV and arthritis.
    The drug was withdrawn half a century ago as a treatment for morning sickness after it was linked to birth defects, including shortened limbs.
    It has since been discovered to be an effective treatment for leprosy and multiple myeloma – a cancer of blood plasma cells.
    Researchers at the University of Aberdeen’s Institute of Medical Science believe that changing the drug’s structure could allow its use for other illnesses.
    The team hopes that safer versions of the drug can be tested in clinical trials within a few years.
    The Thalidomide Society said it supported the use of the drug to treat myeloma.

    David, we were all disgusted with Thalidomide and it’s disturbing effects on the foetus in the womb. Does it disturb you that Thalidomide is coming back or do you think, that as it is not given to pregnant women any more that this is a quite reasonable proposition.

    In this same paper today, it was divulged that a young baby was given Viagra to help with pulmonary hypertension and it seemed to be working.

    So, my basic question is despite, perhaps, a long history of drugs with a ‘very bad history’ is it morally defensible to criticise them, when they return with a more credible use.

    This might be the way ssris go.
    Is it, also, morally defensible to claim they might have made a few aggressive, violent and suicidal, but in, the long run, they might have a use for something other than depression and anxiety.

    Is there anything wrong with re-branding drugs with a ‘very bad history’ into something, that, actually, might be credible.

    What do you think?

    • All drugs are poisons, the art of medicine is finding the right dose and right purpose for these poisons. RCTs tend to give these poisons a clean bill of health – as they did with thalidomide.

      It would be fine if a new use could be found for thalidomide. There have been lots of claims of new benefits such as leprosy and multiple myeloma but none of these have stood up. Meanwhile thousands of babies are still being born limbless or deformed by it in countries such as Brazil.

      There seems to be a terrible repetition compulsion with some of these drugs – like Bendectin – just brought back to the market – this not thalidomide was the drug used for nausea. As though if we can find some benefit we will cancel out the horrors of the past. Fifty years after thalidomide, we are using more and more drugs in ever increasing amounts in pregnancy with no-one recording what pregnant women are taking or in the cases of miscarriages and terminations – what the mother was on. A new thalidomide could be happening now and companies would get away with it

  3. There was a panorama episode a few weeks ago about the dangers of SSRI drugs in pregnancy. I thought it was rather soft and narrow because of its focus on physical effects, leaving out the many horrible psychological problems that you certainly wouldn’t want as a pregnant women. Still, at least it was some coverage of the dangers and that prof Pilling from NICE seemed like a genuine guy.

    Overall the programme was pretty ordinary and the argument that was presented for the use of SSRI’s was the usual predictable tripe. You know, this old chestnut….

    “a recent review of scientific literature concluded that the drug “does not appear to be associated with an increased risk of major foetal malformations”.

    “The decision not to prescribe anti-depressants to a woman who is depressed… may generate greater risks to the woman and her foetus than the risks of exposure to the medication.”

    Every time I read that well used and rather pathetic argument, and then think of how the staff of pharma are supposed to be ‘just like me’, a little bit of sick creeps into my mouth.

    But what really interested me was what was going on elsewhere at the same time as the panorama episode. Meanwhile over at channel 501, the Sky news team had ‘discovered a story’ on a potential new genetic test for PND. It was big news, getting re-run every 30mins for the rest of the night. As you can imagine, the segment was about the dangers of depression to the mother and child and how catching it and TREATING it before birth with the aid of this ‘NEW’ discovery, was just we needed.

    Of course this was not enough to defend against the already weak panorama argument. RCPSYCH had already made the same defence that Lunbeck made above, and released the following statement before the panorama episode hit the airwaves.

    David said,
    “A new thalidomide could be happening now and companies would get away with it”.

    In my opinion it is already happening and they are getting away with it. Thanks to the likes of RCPSYCH and the corporate media doing what the money tell them to do.

    Heart defects get past the pharma defence a little because of the horror of looking at a little baby wired up to a machine, or going for major surgery to fix a malformation is not that easy to cover up…not unlike the missing limbs of thalidomide. But the many other horrors inflicted on unborn children and their families, well they are not so noticeable, not so easy to measure, not so easy to prove, but many times are no less horrific that a baby with a malformation.

    SO who won the battle of warning on the dangers of pill in pregnancy, between Big Pharma/Corporate media/RCPSYCH vs BBC Panorama/Prof Pilling NICE…

    lets see what the UK mothers said.

    Pretty depressing isn’t it. Thalidomide is not only here, they have some mothers even defending it. You have to respect Big P, they play the game rather well.

  4. As a marketing person, when you look at this situation from the public point of view most are appallingly ignorant of whether drugs are safe or not safe and feel no need to question the judgement of their prescriber.

    What occurs to me at this juncture, is that the Daily Mail, in particular, run articles on drugs several times a week by science and health journalists. Most of these articles describe the positives of such drugs and so this powerful media is helping along the ‘no need to question’ fallacy.

    Sometimes, in the space of a week, for example, Statins will help every single person over fifty who takes one daily, to curtail any possible future problems. It advocates a safety net – take one, and don’t worry. Isn’t it better to take one and feel safe, than not take one and risk problems developing.

    Then someone writes an article saying, it’s a bit worrying this Statin thing. I am not sure everyone should take a Statin, after all.

    The same with Aspirin and pain killers and a myriad of other drugs.

    Is it beyond hope that every single drug article is followed by a paragraph from, with it’s now enormous data base, which suggests anybody interested in learning more about their ‘potential’ drug, should type in which gives the patient an opportunity to make an informed choice and learn about the experiences other people have had.

    How about Professor Healy has a meeting with the Daily Mail, in particular, describing his Health and Drug Database and offers them the opportunity to run with Rxisk, for the safety and learning, of all it’s readers.

    All it needs is a couple of sentences below each and every article.

    I can see in my mind’s eye a huge article about Rxisk and an Editor’s choice to put the Rxisk opportunity below every article about drugs which sometimes are grossly irresponsible and can lead the reader totally in the wrong direction.

    Is this too hopeful an idealistic idea?

    Would doctors and psychiatrists find this rather unsettling that their decisions are being questioned and that their knowledge is not as up-to-date as they seem to think it is?

  5. I have been on Humira for almost 6 years now. It has worked wonders in terms of putting my UC into complete remission, yet there is still something about the drug that I am iffy about. Mentally, I have not felt like myself since I have gone on the drug. I was diagnosed with Generalized Anxiety Disorder around 8 years prior to starting the drug which I was never medicated for and eventually it went away and I assumed it was a ‘puberty phase’. However, I saw my anxiety come back around the time I started Humira. And it was the worse kind of anxiety I have ever had. I get close to panic attacks when I am really stressed now and I always have a constant tight feeling in my chest. I have spoken to my GI doctor about this several times and he doesn’t think it’s connected… but I do. I also don’t have the same kind of energy I used to. There’s at least one day of the week I feel like I am fighting the flu and I constantly feel burnt out. This is a given since it is hard on your immune system. Another major thing I have noticed is brain fog and trouble concentrating. . For these reasons, I am considering going off of it. I am starting a new career and I feel as if feeling this way is affecting my job performance and my ability to work with people. Anyone else notice similar symptoms since starting Humira?

  6. I was diagnosed with UC at the age of 12. Was down to 63 lbs. and in incredible pain. I was put on Prednisone for a few months and then on regular meds to keep me stable, going back on the Prednisone temporarily whenever I had a flare up. The last time I had a flare up, at the age of 24, I was started in a very high dose of Prednisone. It reaked havoc on my body. Weight gain, bone density loss, heart palpitations, etc. and the flare up didn’t go away. Until I tried Humira. Within a few days I started to feel better and I haven’t had a flare up since. Once every few years I’ll start to sense some mild symptoms of a possible flare up, so my doctor okays one extra dose in between my regular doses and that always stops the flare up before it starts. I have been in remission for 5 years and never been healthier. No pain, no infections, no blood loss, no missed work. Yes the shot hurts, but it lasts 10 seconds and then it’s over. I can’t say that it’s the right choice for everyone, but for me, it was one of the best decisions I ever made.

    • Thanks for a positive response on this drug. I have had UC for 28 years and now I’m in horrible flares after radiation for breast cancer. I start humera this week because I’ll try anything at this point. I have to live somehow so maybe this drug will work for me and you. Stay In touch and God bless you Sara.

  7. I am a research nurse about to begin a Humira post market registry, which means I will track patients prescribed this drug for 10 years to see how safe and effective it has been for the patients who volunteer to participate. I collect both the negative and the positive results that patients report and the sponsor must include all this information, because the FDA can monitor any clinical site as well as the sponsor. I have been to several different web sites and reading the comments brought me back to 1967 when I was diagnosised with UC at the age of 17. I suffered all the same details I just read in the comments, although my only medication was prednisone. Humira was not an option back then. No one has asked for my advice but we all know that medications have good and bad side effects, if you don’t want the bad side effects of the medications and get to the point where you hate what UC has done to your life my advice is to consider surgery. I had a complete coloectomy after 8 years of the agony and fear that gripped me when I didn’t know where the nearest bathroom was or if I would get there in time. Traveling was impossible because gas stations for bathroom stops were not open on Sundays back then. So if you have done the math, I’m 65 now and have lived with my ileostomy for 40 years. After the surgery I could be more active because the diseased colon was removed my overall health improved. Hiking, biking, skiing, swimming and boating all the activities that took me away from the bathroom were no longer out of the question. Some advantages, no pain, no cramping, no colonoscopies, no fear of colon cancer, no medications or side effects and the newer durable medical equipment for ostomies are well designed. MLW,MSN,RN,CCRC

    • Hi Marorie, For years I suffered from ulcerative colitis, was on so many different meds, steroids constantly, I was hospitalized in 2003 , over dosed with IV Steroids, stared bleeding profusely, husband and son took me to UNMC in Omaha Nebraska, where a wonderful GI doctor saved my life. Was in psych ward for several weeks to slowly bring me down.I was diagnosed with being in a “Steroid induced Mania” than was in hospital on TPN, IV fluids, fat. Lost alot of weight, I didn’t weigh alot anyway. Never can have steroids again, My blessing “Humira” came along was not FDA approved, but it put me in remission right away. Couldn’t do Remocade shortness of breath and heart palpitations. Anyway , I have been on Humira 40 MG for 13 years, and now I am having tender red nodules under skin on my shins and my muscles feels tender in legs. Have you heard of this before? I am also a nurse for 36 years and will contact my specialist . I searched and it is known as “Erythema Nodosum”. I will be anxiously awaiting your response. I am happy you are doing well. No surgery is doable for me as mine is lower colon. Starts as proctitis. Have a nice evening. Thank you for all you do!

      • You say “surgery is not doable” because it’s in the lower colon. My son struggled for years with proctitis–his disease never left the lower part of his colon–and no medication would help: tried remicade and humira in addition to all others. He had an ileostomy and immediately felt better. His disease was all in the lower section, including rectum. Unfortunately, his surgeon recommended a j-pouch and he has had chronic pouchitis, so he is trying to work with that. He was told it was because a small part of the rectum was needed to create the pouch. But at the end of the day, he knows that if he opts for a permanent ostomy he will absolutely feel better–and sleep again! He is only 27 and this disease has been a nightmare. My daughter is currently on Humira and having some issues, but we’ve learned in our family that an ostomy is not such a bad thing and actually can renew life and joy once again.

        • Julie
          My daughter had 2 years of chronic pouchitits and her uc diagnosis was changed to Crohns. She was put on humira and hasn’t had pouchitits since. Best wishes to you and your family.

    • Marjorie,
      I’ve had UC since I was 14 & now am 56. the last 3 years have been full blown. Stopped Remicade 5 weeks ago due to severe joint & mussel pain. My GI tries to tell me its not from the Remicade, BS I told him. He had me see RA Dr. Test show no RA. but it shows I have Lupus -like symptoms. Really sucks. Most of the time I don’t care if I wake up in the morning or not.
      Seriously thinking about having colon removed & have the bag…..BUT am I able to enjoy our hot tub & swimming?
      Dr wants me to start Humira but after reading how painful the injections are & how mostly everyone says its bad stuff I don’t want to now. Joint pain hopefully will go away at some point??? 🙁

      • While my son had his ostomy, he was able to hot tub and swim. I have a friend who had hers removed years ago and has a bag–she scuba dives, skis, rock climbs, camps–literally anything she wants to do! She was the inspiration for my son to finally follow through on his surgery at 24. He says he never felt better! He went through with the j-pouch and has has issues, but he knows if he needs to go back to the bag, he will be rid of all of the issues he has and had with UC and its accompanying myriad of medications!

      • Yes you can swim after colectomy. I dont take any drugs and feel like myself. Never worry about finding a washroom. Im not saying life is perfect with a bag, takes getting used to but otherwise you live a normal life.

    • Hi, I suffered with UC for years, taking prednisone, pentasa. I have had a miserable journey. Back in 2003 hospitalized for malnutrition, bleeding, and placed on IV steroids, where I was overdosed, started bleeding profusely, my husband and son transferred me to UNMC where they saved my life, was in a steroid induced mania, was locked up in Psych floor to slowly bring me down. Personality change, blew up like an elephant. My GI specialist, my angel. Started me on Humira before FDA approved. Immediately went into remission with 1 dose. Was on Humira every 2 weeks for 13 years with no problems. Occasionally a upper respiratory infection. Antibiotics took care of it. Than in March, I had a deep cleaning, dental , obtained an abscess, went on penicillin, broke out with erythema nodosum to my lower legs. Had to stop Humira, put me on 20 mg o prednisone, weaned off after 1 month, didn’t help, only gave me euphoria. I than was referred to dermatologist, he put me on bed rest with legs elevated for 9 weeks. Went on low dose naltrexone. This is good for inflammation, well here I am now starting to see small fresh blood at different times on my formed stool. I am afraid I am now breaking down again. I also had gone gluten free, drinking protein drinks everyday.Doing everything possible to stay healthy. Now I am discouraged, and know I need to contact my specialist, to see is I can go back on Humira or what? Before Humira, I had a reaction to remicade, shortness of breath and heart palpitations. I have been on pentasa for inflammation over 25 years. I always have labs drawn, which were all great, even when I came out with the nodules. A lot of tests done, all negative. Thank god. Anyway, I am a nurse, now 60 years old, still trying to work at a busy community health center. Do you think I would be able to go back on Humira ? I guess I wanted to tell my blessing story of 13 wonderful years on Humira, living a normal healthy life. Thank you, Debbie

      • Debbie,
        Thank you so m uh ch for your story. My son, age 19, was diagnosed with UC in late November. He spent all of December and most of January in the hospital. 3 blood transfusion, lost 47 lbs, and has a blood clot because of sever inflammation. He had a remicaid infusion in the hospital and it went well. However, he just had a reaction at his second infusion. I’m glad to hear that you were able to use Humera after having a reaction to Remicaid. I’m praying something works. I’m so afraid for him and his mental health is suffering.

    • Hi, I have had Crohns most of my life. I wasn diagnosed until 42. I’m 57 now and have been on Delsocol. I haven’t been in remission for 12 yrs. They won’t work with me on Prednisone. That is what put me in remission 15 yrs ago, with pentassa daily after the prednisone. I recieved another drug suggested by my GI Dr. It gave me pancreatitis. Now they are nudging me to Humara. I’m very nervous about it. I really have been reading to get more info.
      What have you gathered so far? I would like any info you have gathered. Thanks

  8. November, 2014
    It is Thanksgiving and this year I am really thankful for Humira. I have ulcerative colitis and have been on Humira for 6 weeks and have my life back pretty much back to normal now. UC wrecked my normal activities as I had to stick close to a bathroom and totally changed my diet. So far I have experienced no side effects and am only enjoying the benefits. Reading all of the negative reviews of Humira almost kept me from trying this drug……….so glad it is working for me!!!

  9. Well the VA diaganiosed I with UC in 2005. I have been on Masoline for years with no luck, the VA started me on Hurmira approx 3 months ago, and my simptons have all increased, 15-20 painul movements in a 24 hr. Period. i have losss 20 plus pounds, got gout from so much fluid loss, right now i have the flu, but the 1st week I started, I had 3 major sores break out on me. I use the pens twice a month, and the VA is already talking about doubling up on my dosege! Something tells me to get off this bus!

    Good all, I hope you have better luck than me.

    Best Wishes,

  10. I have had UC for 20 years now. After prednisone pretty much stopped working for me, I was startex on Remicade infusions. After an anaphylactic reaction to that, I was started on Enbrel which did not help at all. I was finally started on Humira about 3 and a half years ago. Although I still have occasional minor problems, Humira has been a miracle for me. I pray it keeps working for me because going back to 15-20 trips to the bathroom a day while feeling as though I was bleeding to death is nothing I ever want to experience again.

  11. My doctor had me immediately stop taking Humira when I was diagnosed with Breast Cancer. Read up, breast cancer was one of the malignancies listed on the “possible side effects” list. It has been removed. I suppose not “enough” people got breast cancer to make it worth mentioning…

  12. I started Humira for RA but my RA doctor left. Later I developed UC. The Humira did not work on the UC, and I found that I got complete relief for my RA from Low Dose Naltrexone. Even though I told my Doctor that the Humira didn’t work he wanted me to keep it up. But I stopped and my doctor “through me under the bus,” even though Humira in their documentation, and the FDA said it only had a 18% chance of working.

  13. I have been on Humira since 2007 and it saved my life. I tried every drug on the market and was hospitalized several times for my crohns/colitis. I’ve had this condition for 15 years and it was never under control. After one month on Humira I was a new man and suffer no more. I don’t have any side effects and I have my life back. I know a few other people who take it and it works for them too. I don’t know the long term side effects but I couldn’t have gone on much longer how sick I was. Thanks Humira.

    • It is nice to hear that there are those who are finding relief for their Ulcerative Colitis with HUMIRA. I was one of those in whom there was no evidence of remission. I went with what AbbVie and the FDA recommended and did not continue HUMIRA. Sadly, my doctor dropped me as a patient because I would not take HUMIRA. This is for the best as he had gotten to where he would not listen to me about the problems I was still having and he would continue writing on my record that HUMIRA was working, yet it never did. Keep up your good work in helping those you can with HUMIRA.

      • I was put on Humira by my doctor after I had reconsrtuction surgery. I already had a J pouch for three years that caused me unending trouble. I gave Humira a go for six months. It did not treat the symptoms that the doctors said it would. It did not resolve my anaemia. It did not help pouchitis pain- if anything it aggravated it. It did not heal the fistula.

        It caused the most oppressive depression, both mentally and physically.
        When the my doctor saw that it was not working, she insisted I keep taking it. After they hospital ran tests on me, they concluded that it did not work and I should take more. They continued to insist that the drug controlled the disease even though it did not and they would blame me for the symptoms I was experiencing. Everything from ‘go and see a psychologist and manage your mood’, to ‘you think your special and your not’. I do not like the brain washing that goes with this drug. I really don’t think it did much for me.

      • I had debilitating UC, tried all the usual drugs, except for biologics like Humira, for more than a decade with little to no relief. I resisted biologics because of several reasons. All the horrifying patient testimonials didn’t help. I finally threw in the towel about a year ago, when I knew continuing on the path of resistance was going to take me down a road of disability, joblessness and a family I wouldn’t be able to care properly for or support. My doc put me on a Prednisobe taper followed by initiation of Humira, and I’ve been in remission ever since. I’m a nurse, and ironically, I now work in Endoscopy. I guess I want people to know it’s OK to go into it with optimism. I try and visualize this med as a healing agent, and it has truly saved my life. I hope it continues to work for me and for any of you, when you are ready to give it a try!

  14. Hello everyone. I’m a 30yr old mother of two and ulcerated colitis has ruined my life for the last 13yrs. I’ve done it all… Every kind of medicine you can think of..prednisone all the time and nothing seems to help my flareups. My doctor has recommended me to try the Humira shot . I’ve been researching it for about a month now and still very cautious on what to do? I’m so nervous to try this drug with all the negative feedback I see but I also see a lot of positive as well. I seriously cannot go another day with this disease it is killing me… Does anybody have any advice on what I should do or any recommendations on taking the Humira shot I really need to get my life back in order for my children .

    • Krystle

      No one can answer this for you. Humira can clearly do great good but also cause great harms. In recognition of this the expectation was or should be that its use should be restricted to people with serious conditions – as your’s sounds. The concern has been a marketing of this and related drugs to people with problems such as a small patch of psoriatic skin or not absolutely perfect crohns or colitis.

      Your safeguard here is if you have a doctor who is committed to recognized the harms this drug can do who will intervene to stop it in your case at the first sign or harm or if its not doing all that as hoped for. Having a nurse paid by Abbott even if you get on well with him or her is not the same thing. Finding the right doctor is your best bet – you can’t assume that all doctors are committed to putting your interests first


  15. I am 71 years old – finally I was diagnosed in 2004 with crohns disease. I know that I had it for far longer than that. The medications I was on sulfa drugs were clearly not doing their job well – I would get flares. Being sick and having a blockage was not great. This year in April my consultant recommended I started Humira – I had to have various examinations and tests – I have a fatty liver but apart from that there was no problem. Initially my most serious side effect was a terrible skin reaction. A patch comes up which is red and itchy for several days and takes almost a week to subside. The inflammation area does not disappear before I get the next injection. I was told by Abbott personnel to ask for an antihistamine recommendation from my consultant. This week I got really sick in pain throwing up. Tests were done in the hospital – nothing shows up – so I go home – still feel I have indigestion. I am not sure what to do – my next shot is coming up – I am concerned that my liver could be a cause – I have a GP appointment this week and will have a discussion with him. In 2000 my gall bladder was removed – Knowing what to do is so difficult!

    • Hi there – I was given Humira 4 years ago in my fifties and right away I was getting strange rashs and my skin was dry and lumpy looking. I was told it was not the Humira. These rashs came and went and then last fall (2014) I was covered from head to toe with every kind of rash in the world. I was that itchy I couldn’t sleep . Then my face started to turn to leather and pucker and then it started peeling in small pieces. I was losing sight in my left eye. My bowel stopped for 3 days and was so swollen inside that it took me months to get back to normal. Still I was told it was not the Humira. By Xmas I could hardly walk . I felt my muscles were turning to jelly and that I would just sink to the floor. In Jan 2015 my skin was hanging off my legs and arms just like I hadn’t excerised a day in my life. I stopped the Humira even though the Dr didn’t like that and still claimed it was not the Humira. After 2 weeks I started feeling great and day by day I could see a small difference. It is now 9 months and I am still healing and the rashs come back every now and then but only for a very brief period and not as severe. Humira has left me with Neurophy nerve pain which is very annoying – like a bad tooth ache and I still have major weakness in my large muscles that I hope will go away. When the final accumulation of symptoms came on – they came on fast and I would tell anyone on this to watch very carefully and come off it right away. There are many lawsuits against Humira and also many Deaths. Only we know our bodies and we must do what is best no matter what . I’d rather live on pain killers than trust Humeria or other biologics

    • What happened to you? Fatty liver , throwing up what did your doctor say was wrong with you? My husband is going through something similar

  16. I’m writing on behalf of my boyfriend. He’s been diagnosed with UC for 5 years. He’s had an increasingly bad flare up for a YEAR. Has anyone ever had it for that long? I always see a few months, but he’s been bad for an entire year. Blood, mucus, and frequent bathroom trips (avg once every 30 mins). In the mornings, he’s in the bathroom 4 times within the 45 minutes it takes him to get ready for work.

    He started Humira and is on his 12th week. He hasn’t seen results. Has it taken some people longer to see results?

  17. I’ve been dealing with UC for 33 years. Diagnosed at 28 I started azulfadine for 90 day periods. It would knock it out for about 5 years until the next flare up. The last time of that started causing flu like symptoms like major body aches so bad I could hardly walk. It was determined that I had become allergic to sulfa so I started Asacol with pretty good luck for a few years with a few minor flare ups in that time. Then it came back with a vengeance with a major severe flare up for 3 years in which time I lost 20 lbs. endured all the terrible things discussed in the former testimonies, urgency ( 1 minute to get to the bathroom or break out the spare skivvies or go commando; hint; always carry a knife to cut them away), bleeding out anally with a little diarrhea thrown in for good measure. The doc mega dosed me on prednisone for 3 months to try to stop it. That is terrible stuff. No sleep for 2 months, anxiety attacks all night trying to get some sleep knowing I have to get up for work in the morning. Then I contracted cellulitis and any gains were lost due to the mega antibiotics they put me on to stop that or amputate my arm to keep it from spreading. I got a new doc that started me on 6mp but the dosage was too low so the disease progressed from the first 8″ to the entire colon within that 3 years until prior to my next annual colonoscopy they told me to bump it up to 200mg daily and that snapped it right out. I was in remission for the last 5 years on 150mg until 4 months ago and the beast returned. I’ve been on 200mg now for the last month and a half with a month of prednisone too with no results. Biologics are the next step, Humira, and I appreciate all the input you all have shared. I thought it was going to be the holy grail of UC but after reading all your input I can see it will possibly be a rockier road than I had anticipated. I can’t see any other option other than a colostomy and that is really no option even at my age of 61. The side effects of the drug seem to be less of an threat than the disease at this point. Cure my ills at this point or kill me for this is no way to live. Waiting on the go ahead through insurance and will see how long I have to be off the 6mp until I start the dreaded Humira. Wish me luck, perhaps I’ll be lucky enough to be a success story like the few I read in here but time will tell but if it weren’t for bad luck I would have no luck at all,
    May the Good Lord Jesus take a liking to you all! †††

    • Dear Murrey,
      I have had UC since ’09. Before that I had RA ’89. I have gone through a number of meds with the RA including Celebrex and LDN, which was pretty good. Then I got the UC + IBS and Humira came out. There was some hope that it might cover the UC but it didn’t – my Gastroenterologist said it was working but it wasn’t. He fired me over the matter – small loss – very small loss.
      I have started Remicade and maybe things will be better – I will see. I am retired and nearly 75 and I write little Christian books based on my research in the Word. I will pray for you. In His Matchless Grace, Sam Littlepage, Emeritus, Physics

  18. Just took my final dose of humira today it has been 10 weeks with zero results except for difficulty swallowing from a burning I found cabbage is the very best for inflammation I have been juicing cabbage carrot juice I found on juicing for chrons it has been cleansing really well my hope for all who are sick is that you cry out to Jesus to help you with this terrible sickness he might not heal you but he will be with you through anything you need him for in your life I rather be sick with Jesus than be without him that is separation from God if you are separated from God this would be the very worst condition you will ever go through for those who do not believe please give him a chance he is in the buissness of saving,healing and bringing peace and joy yes I have had U,C for two years I also have the joy of the Lord were my strength comes from God Bless you. Rick

    • Hi Rick,

      Aloe Vera Juice
      Redmond Clay
      64 ounces of water/day
      No red meat (diet modification)
      Young Living Oils

      All of this at my fingertips…..its a whole new life.

      Best Regards,

  19. I was diagnosed with ulcerative colitis at age 17, the result of over medication of antibiotics . I suffered with all of maladies of this terrible disease for twelve years. Near death I decided that surgery was my only option if I was going to have a life , a hard decision for a single man.
    After 35 years of living with my decision I can barely remember what life was like without an iliostomy. My iliostomy has never prevented me from doing anything! My wife and children have never known me any other way. I have friends that have no idea of my ordeal or my ostomy.This is not to say that problems don’t arise but never anything close to a day living with out of control ulcerative colitis.
    Take all the medications and treatments you can tolerate to fight your fight but if your cause seems hopeless it’s not ,surgery is a awnser to getting your life back and being heathy again.I have never told this story to anyone other than my closest family but after reading all of your plights I was compelled to tell my story. God bless you all!

    • Joe,
      I’m interested in your comment about an over medication with antibiotics being the cause of your UC. I have been convinced that 2 rounds of a z-pack for bronchitis brought on my uc but no doc will give this credence. How do you know for sure that was the culprit?
      Also, what’s the difference between an iliostomy and a colostomy? I’m having really bad side effects from taking Humira and am wondering what to do next.

  20. I was diagnosed with very severe UC last May when I was 15. I first started feeling sick a month before I was diagnosed. I was in constant pain, had a loss of appetite which resulted in a 15 lbs weight loss, lost tons of blood, had urgency and even pooped my pants. All while going through this first month, I went to school everyday and played sports even though I felt horrible. Finally my parents took me to the local ER in my small town. They gave me blood transfusions but couldn’t diagnose me so I stayed the night and then I was ambulanced to the nearest hospital that had a pediatric GI Doctor which was two hours away. Since then I have been in the hospital 7 more times and I’ve tried Remicade, Humira, methotrexate, Apriso, been on and off Predisone, and now I’m on Entyvio.

    Humira was the worst medicine I’ve taken. The pain was horrific. The worst part of it was the fact that it only had a 20% chance that it would put me in remission. I spent my whole summer going through the pain that I would feel every time I would have to do an injection. I expected to feel better after a couple of months but I ended up flaring after 10 weeks.

    I just want to say that UC doesn’t only affect you physically. I have also been diagnosed with depression. I spent my 16th birthday in the hospital and I haven’t been able to go to school or take any of the classes I want to get this year because of how sick I’ve been. I missing out on my junior year and have lost many friends because of this disease. My only other option is surgery. All I want is everyone who is going through this to feel better and know they aren’t alone.

  21. Is there anyone out there that has taken Humira after a colectomy? My last 9 inches of colen and my small intestine is now ulcerated. Doc wants to try Humira. Would like more info before I decide.

    • Hi Jerry

      My daughter had a colectomy and now has a jpouch. She was originally diagnosed with UC but her diagnosis has since been changed to crohns. She has been on Humira for 18 months with few side effects.

  22. Hello,

    I was first dx with colitis when I was 25 and now at 28 my new doctor is now saying it might be crohns. How is it possible that he is unsure ? I have never been in remission at all since 25 years old. Bleeding is so bad that I need to get iron infusions and b12 shots due to low low levels. My urgency is horrible and I cannot hold it. I some times do not eat until I get home and so the late nights and mornings are the worst for me. I have to wake up 2 to 3 hours before leaving for work to make sure I get it all out or I will not make it to work in a 25 minute drive. Prednisone never worked for me and pnly caused weight gain, pain, bloating and just felt horrible. I started remicade and it helped maybe 30 %, but that was about it. I only stopped it because I ended up getting Lupus. Now my doctor said Humira can do the same thing, but its less likely to cause Lupus, so does any one know how likely it is? Also if I had it from remicade ? They have the same drug, but made differently.

  23. I have suffered with Crohn’s disease for the last 30 years, and after years & years of hopping from one useless tablet to another & taking Prednisolone for 18 months on one occasion at 60mg per day dosage. I ended up in 2013 on Infliximab, Every six weeks by infusion WOW ! It was like my illness went away, I was then symptom free for about 2 years.. Then the Hospital said that my Inflamatory markers were high & they were putting me on Humira . They tested me for anti bodies against the Infliximab, but I was clear, they said that I was just losing response. I was reluctant to come off infliximab as I was relatively symptom free for about 4 weeks after the infusions, slipping back slightly for the last 2 weeks. But I felt really well for the first time in 30 years.
    I started on Humira about 6 months ago. Self injecting every 2 weeks.
    I have been a lot worse on this stuff, my symptoms are awful, I have no control, And a few hours after injecting I get trapped wind type pains & mucus just runs out of me, My inflammatory markers are off the scale at 2200 or higher.I can’t wait to get off this stuff.
    I wish that all these posts about how good humira is.Also posted the negatives to this useless stuff.
    In my area it is administered by a Private (profit making) company called allied healthcare burton on trent. they promised it would change my life, they were right…SADLY FOR THE WORSE !!

    I have now got to have an MRI of my small intestine, dozens of blood tests, endoscopy, Trough Level tests for Humira / and Azathioprine…etc that the Consultant can justify to the financial panel of the hospital trust the reason for taking me off the Humira.
    All this OF COURSE takes months & months. Whilst I’m here suffering…No Rush !
    And a very high percentage of patients develop reactions / complications or lack of response after 5 or 6 months of taking it. So if initially you think its working it may only be a temporary fix.

  24. Update;
    Started Humira September 23rd and the Doc kept me on an increased dosage of 6mp. The first initial dose of the 4 injections in the belly of Humira burned a little but I found out if I let it warm up to room temperature (about 30 minutes) it reduces that. It didn’t have much effect until about the last week of November and then within about a week before my doctor visit it started clearing up the flare. It snapped it out pretty quick all of a sudden. No bleeding and complete control so I feel safe wearing the new skivvies I was afraid to wear. I’m doing great now and consider myself in remission currently (Thank you Jesus) but the last blood test showed my liver enzymes up so the Doc dropped me back to 150 mg of 6mp. I have had no real bad side effects from the Humira other than a bad headache from time to time, and don’t know if I can attribute a couple of insomniac nights to it or not but I did my last injection in the morning instead of after work and didn’t have that occur. Time will tell on my next one in a week. I had a rash of fever blisters and sore mouth from the extra 6mp like when I began taking it but with the lower dosage I hope that will not happen so much now. I hope that it’s not just a temporary fix but time will tell. Tomorrow is Christmas and I feel like Jesus gave me a birthday present on HIS birthday. That’s my Jesus. I wish everyone well and Merry Christmas and pray that you all can do as well as I currently am. In Jesus’ name, Amen.

  25. I have used hunira injections for over 2 years and i sometimes forget I have uc,when I was diagnosed the whole length of my colon was full of cut and ulcers. Blood was pouring out of me and I had 15 bms a day. Now I go 1or 2 times a day,sometimes not for 1 or 2 days. With my wifes Walmart insurance it would cost 1500 dollars a month for the pens but thanks to abbvies assistance program I get them for free,Before Humira I couldn’t eat out and everywhere I went I had to note where the bathrooms were.Thank you Abbvie!

  26. I was diagnosed with severe UC by a new (to me) GI doctor on my third hospitalization in two months; the first doctor I saw kept telling me it was all in my head, so I consequently got sicker and sicker without proper treatment. IV steroids in the hospital and prednisone afterwards got me back to feeling just about normal, though I was still building up strength after losing 30 pounds from being sick. The new doctor wanted me to start Humira so I would go into remission and hopefully stay there.

    During the first few days after the loading dose, I had all sorts of muscle, joint, and abdominal pain. That mostly calmed down. But about the time I was to take the next dose the joint pain came back with a vengeance and my legs, feet, and hands started swelling–enough that I couldn’t fit my feet in some of my shoes. I was also having extreme anxiety from having to give myself the injections; they burn incredibly badly, and I messed up one of the shots because I flinched at the noise from the trigger and sliced myself with the needle. Just when I was trying to talk myself into dealing with the injections, my hair started falling out–not in clumps but maybe 50 strands in the shower, that much more when I comb it out to dry, and several strands here and there throughout the day. That was the last straw for me, and my doctor agreed that with all the side effects I should stop taking it.

    It’s been 5 weeks since that initial loading dose, and I’m hoping as the medicine continues working out of my system I will lose the pain in my hands, wrists, feet, hips, and knees and that my hair will stop falling out. I don’t know what Humira would do for the UC–my bowel symptoms were almost cleared up before I started it, so there really wasn’t any “improvement” that I could have noticed from it. All I’ve experienced are the nasty side effects, which both the doctor and I are sure came from the Humira, since I was off the prednisone for awhile before I started it and it was the only change in my drug regimen when these symptoms started.

    The printed materials that come with Humira include warnings about all sorts of side effects, so these possibilities aren’t a secret. However, and of course this isn’t a surprise either, I will also say that the “Humira Nurse Ambassador” who would call to check up on me, though very pleasant, did not want to hear about the symptoms I was experiencing and kept repeating that the most common side effects were just irritation at the injection site. I do feel like I’ve screwed up my body pretty badly with this stuff; at this point I’m just hoping it’s not permanent.

  27. Hi all,
    Started Humira -every other week- for 6 months now. It worked great for me and I am on remission right now, but still taking it. No side effects at all. I tried a lot of things before it and did not work. I hope things remain the same in the future and wish well for all of you.

  28. My husband (age 53) has had UC since 1992, where as ASACOHL has been effective.
    Recent flares and a car accident to add to it.
    He had a colonoscopy done a week ago and was diagnosed with END STAGE UC.
    Which means he can try HUMIRA and hope it works or have a colostomy.
    So we got the news his blood work checked out good for the humira.
    So we will start it tonight and hopefully we notice a positive effect.
    Enjoy reading other peoples experience with HUMIRA.

  29. I was diagnosed with UC when I was 21 in 1987. At the time, they tried me on hydrocort enemas and also azulfazine. Both made me really sick and I got Lupus and pleurosy which is a really painful lung ailment. Then after being on 60mg of prednisone, I had what may have been a psychotic episode or adrenal emergency, but toughed it out alone. It was like 48 hours of hell. I didn’t taper the prednisone because no one memtioned it. Very dangerous, I could have died. At 21, they told me that I was going to have to have a complete ostomy surgery. I was horrified, then found some info in a book called Sugar Blues where a man was talking about bleeding from his intestines. So I cleaned up my diet, got off all of the ‘medications’. Anyway, I was in remission from 1989-2010. All of a sudden it came back with a vengeance and I was in bed for 6 months. Then developed a terrible cough, the doc gave me a zpack and I was totally FINE with the UC. It went into remission. Then in 2012 it came back and I didn’t have insurance so laid on bed for a year bleeding to death. I didn’t know you could die from this. I was rushed to ER having lost half the blood in my body, hemaglobin at 4.2. Three hospital admissions later and 9 blood transfusions, I have been through remicaide (failed to severe joint pain and a giant swollen left ankle), entyvio (made it worse), asacol, (projectile vomiting). I started Humira 12 weeks ago and it worked after the loading dose for about 2 weeks then it stopped. Now the urgency is worse, bleeding is back and I basically can’t leave the house for fear of an accident-which I have had about 4x and it is thr most humiliating thing I have experienced. I just read that STD Proctotis/colitis can mimic UC. People who have STD colotis, don’t respond to medication. A simple ZPACK or 2 should clear it up, but US doctors don’t seem to be aware of chlamydia UC. UK doctors have much research on this. Anyway, I am 2 steps from being readmitted. Hemaglobin back down to 8 despite many iron infusions. I am about to give up hope. I have now been sick for 4 years straight with no relief, can’t get disability, can’t work, have depleted my savings and soon will not be able to afford any insurance at all. I am pretty sure that this is STD colitis, latent because chlamydia does the same thing to women and causes pelvic inflammatory disease. Apparently if you get it in your intestines from wiping or sex, you can also get sick. Women can also pass it to their babies. I mention this because after thousands of dollars and years of suffering, a simple, cheap antibiotic will probably do the trick but no doctor will prescribe it hear in the corrupt USA. They would rather have us on these expensive biologics. Good luck to everyone. Humira isn’t working for me and just making me feel like I have the flu and RA 24/7. Scared to stay on it for more than 3 months with no results.

  30. One year ago my son was diagnosed with chron’s disease, and had some of his intestine removed one month before his 17th birthday. He had stomach ache sometimes before and went to bathroom a lot but we were very careful with his diet. He was very anemic before diagnosis and that is how we found out. He has been on 40mg of humira every other week since last September. He has gained about 40lbs which is good because he is getting nutrients from his food now. He says he has no symptoms but is very anemic again. Had two iron infusions in February-March. Hemaglobin raised but now is back to 7.9. He is also on 28mg three times a day of Bifera Hip & Pic iron. Where is iron going then if he has no chron’s symptoms? He has cbc done about every 2 to three weeks. We have asked about humira causing anemia but GI doctor and humira nurse keep saying no. Humira Ambassador Nurse is very nice but just keeps saying we need to talk to the doctor. Now he is away at first year of college 12 hours away and we are bringing him home for a bone morrow biopsy because no one wants to admit it could be the humira. We believe in prayer and know God has a plan but this has been a nightmare. I would like to know if anyone’s anemia is worse after taking humira even if chron’s symptoms are better. I wish the best for everyone dealing with this disease.

  31. I was diagnosed with UC back in 1997 after several “1 step forward – 2 steps back”. My family doctor said I should “eat more fiber – more salads – etc”. But those are the things that cause me to have more UC issues. No more Caesar salads, no more Bailey’s Irish Cream, no more coffee, no more green vegies. I felt like I could do nothing right. Finally found the most wonderful GI Dr in the world. He quickly diagnosed my UC – initially put me on sulfasalcyide, but we discovered I couldn’t tolerate it. Tried several other things, even wound up with a bacterial infection that landed me in the hospital – then a few weeks later a bad reaction to the meds that I went on to get me back on track. Life was not good.
    I went off everything – and he suggested I start taking a probiotic. OMG – talk about a miracle for me for several years VSL#3. Has many billions of good bacteria in it – several different strains. That worked for about 10 years – I’d have an occaisional flare – but I’d go on hydrocortisone enemas and it would go away in a few weeks. I had regular colonoscopies, and things generally weren’t bad. Until about 2 years ago. Things started getting worse. I went 3 years in a row having a colonoscopy each year. Many pseudo-polyps – but last year was my 1st year he saw any pre-cancerous polyps. Luckily the ones he biopsied were benign. about 5 months after that colonoscopy I started a flare that simply would not go away – 1st of August I had my last colonoscopy and the pix made me realize it was time to do something new. We talked at length and basically came to the conclusion I either needed to go with a biologic (I was allergic to everything else we’d tried) or have my colon removed. Decided to go on Humira in spite of all the negatives I’ve read. Started the 19th of August with the 4 initial doses. I had very little pain (do let it warm up for about 1/2 hr – makes a huge difference from what my nurse said). I took my next 2 doses Sept 2 – due to take my 3rd single dose this Friday. I am very happy so far. no injection site reactions. Only possible side affects are some joint pain and some fatigue – but that could be just normal me. I’m feeling much better. No more bleeding or mucus from my colon. Stools are normal (I’d forgotten what that looked like).

    I don’t know what the future will bring – but so far so good for me!!! I’m living again

  32. If you search the internet you will find a lot of different treatments against Colitis. Personally I found it a bit of confusing to find out what treatment works best. I have read a lot of positive reviews on the use of a dietary supplement containing Palmitoylethanolamide, also known as PEA. 2 months ago I started using PeaPlex and I must say it has a positive effect on my well-being.

  33. Humira made my ulcerative colitis even worse. I stopped after the 2nd loading dose. I had my colon removed less than a year after trying Humira because even high doses of prednisone could not stop the bleeding. So, I no longer have UC, but I now have been diagnosed with scalp and nail psoriasis.

  34. I’ve tried Humira now for 2-3 months for my UC. Zero effect.
    Only side effect so far has been a sinus infection.

  35. I was diagnosed with sever UCI (stage 4) in 2011. I was on prednisone fora while. Things settled down and then they put me on Remicade. The 3rd infusion caused an allergic reaction and they gave me benadryl. The 4th time when it happened again they stopped it and switched me to Humira. It s now 2018 and I am so much better. I still have many BM a day but nothing I cannot handle. Other than raw vegetables I eat everything for the most part. For me Humira has worked. I take an injection every 2 weeks plus Mesalmime.

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