Humira in Ulcerative Colitis

July, 29, 2013 | 28 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    The drug was withdrawn half a century ago as a treatment for morning sickness after it was linked to birth defects, including shortened limbs.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

  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.

  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

  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

  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!

  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.

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