Humira Hell

Dear Adam,

My name is Caroline. I’m writing to you because I need you to help spread the word that Humira is potentially very dangerous. I panic when I see just how many people are being prescribed Humira and I feel I need to share my story to prevent what’s has happened to me, happen to anyone else.

I’ve had colitis for 16 years. It’s been a very rocky road (as it is for everyone suffering with this debilitating condition) but right now, I’m ok. Well sort of. Read on!

Dr. Ed Loftus (from the Mayo Clinic in the US) talking about Humira a little while ago. He is also listed as a doctor from the GI doctor reviews page and his particular review from a site user is here: https://www.ihaveuc.com/dr-edward-loftus-gastroenterologist-rochester-mn/

Since 2003, my colitis has worsened and I’ve climbed the drug ladder. 3 years ago after a hefty flare up and azathioprine ceased to work, I was prescribed Humira. I was injecting weekly and to begin with, it was a wonder-drug. I was symptom-free within weeks. I was amazed. Little did I know that it was causing significant damage elsewhere. Within months, I was struggling to climb stairs, stand up or sit down and had excruciating pain in my knees. My gastro consultant sent me for MRI scans which later revealed that I had Avascular Necrosis (bone death) in both femoral condyles (the knuckle of the femur behind the kneecap). My legs were dying whilst they were still in my body. I couldn’t believe my bad luck.

I’m a wife and mum of two children and my illness had, to this point, already taken so much of me from my family and it was about to get worse. Daily activity was restricted as to try and help the healing I had to “do” less. Easier said than done, when you and your family lead an active lifestyle!

After more referrals to various rheumatologists and orthopedic surgeons, they decided I was allergic to Humira and it was the Anti TNF component that restricted the blood flow in my legs causing the necrosis. I had my first knee operation 6 weeks ago: an osteochondral allograft. Where they hollowed out my femur and replaced the dead/damaged bone with a donor bone. I have been off my feet for 6 weeks but we’re on the road to recovery now. I can stand and walk again. It’s been tough, very tough. Tougher than I ever anticipated. Tougher than any colitis battle I’ve ever faced previously. I have to have the other knee done within 12 months which is not a thought I am relishing.

Have you heard of this happening with Humira? If I had known how much damage and how much more my life would have been restricted I would never had accepted treatment. Hindsight is a beautiful thing, right? But I do want to spread the word. Maybe others are recognizing joint pain and when caught early enough they can be saved. I couldn’t bear to know that more people will suffer as a result of Humira. The pharmaceutical company also needs to be more transparent about the drug they are selling to unsuspecting, sometimes desperate patients.

I would be very grateful if you could help me spread the word. I realize, Humira helps thousands without and nasty, debilitating side effects but that was certainly not the case with me.

I would like to take this opportunity to say thank you for all the work you do in giving and sharing vital information with us UCer’s and providing a platform for help and support and advice.

I hope you can help.

Kindest regards,

Caroline
England.




Humira

15 Responses to Humira Hell

  1. Adam
    Adam March 27, 2019 at 9:07 am #

    HI Caroline,

    Thank you very much for sharing your experience and for letting us know how things are going with you!!

    REally really really hoping that you can move forward from all that you have been through and get back to a normal life doing the things you like rather than being bogged down by UC related issues.

    Thank you again, and wishing you the best!!!

    Adam

    • PM March 29, 2019 at 6:00 am #

      Hello! I was on Humira for one year for severe UC. My diagnosis has since been changed to Crohns. While on humira, I was constantly sick with sinus infections. Twice during that year I developed terrible kidney infections that I only knew I had after high fevers and chills sent me to a Dr. The second time, I became so ill literally overnight and ended up in the hospital with sepsis. I immediately stooped the humira on my own. I am now on remicade and so far have done ok. The humira worked better at keeping my symptoms of the colitis at bay, however it was not worth the risk.

  2. Andy March 27, 2019 at 9:29 am #

    Sorry to hear these atypical symptoms. Humira is in a class of drugs known as monoclonal antibodies. This class of drugs shows wide variation in how it is tolerated and the body frequently mounts auto-immune responses to monoclonal antibodies.

    Biotech drugs based on Mab technology work by suppressing the immune system, which is why all mAbs require dire warnings on the labels about how they open you up for opportunistic infections often only seen in highly immune-compromised individuals.

    Complicated but worth a read: https://natmedworks.com/cbd-and-diet-vs-mouse-antibodies-for-long-term-management-of-auto-immune-disease/

  3. Jeff G
    Jeff March 27, 2019 at 9:39 am #

    Hi Caroline

    I was on both Remicade and then Entyvio for a total of 2 years. I have avascular necrosis in my left hip and need to get it replaced. Bone death from anti tnf agents (biologics) is more common then the drug companies care to admit. Hope things continue to get better for you.

  4. Joanne March 27, 2019 at 9:46 am #

    I am so sorry for your experience, Caroline!

    Very timely to read this story this morning because yesterday my sons doctor said he should start drug therapy with either Humira or Ramicade, and this sure has given us so much more to think about :(

    My mom suffered from a rare auto-immune disease and it is believed that it skipped a generation and has now hit both of my sons, the only grandchildren in the family :((

    Reading these real stories is terrifying, but there is some comfort in knowing others understand the stress and fear.

    To all affected, keep your chins up and best of luck!

  5. Paul S
    Paul March 27, 2019 at 9:50 am #

    Caroline, So sorry to hear about your troubles. I find these biologics to be frightening. I have been on Humira for about 2 years and thankfully it has worked well for me, but I am very watchful for any changes to my health. I am 63 years old, so aches and pains can go with that, but every time I do get a new pain I worry that it could be the Humira. My doctor had originally wanted me to move to Entyvio because it targets colitis, but I was another where CVS mandated that I try the cheaper Humira first. Pretty amazing that in the US we let drug companies overrule doctors. My gastro is great and when the Humira worked for me we decided to stay with it, but monitor closely.

    I hope your pain subsides quickly and that you can move forward from all of this soon.

    Paul

    • Denise March 28, 2019 at 5:51 am #

      I have had the same problem with CVS it’s amazing how they can override the Dr.

  6. Mel March 27, 2019 at 2:32 pm #

    Humira got me into a short remission so I could have my second baby. Unfortunately it gave me three episodes when I lost the feeling in my legs for a couple of hours and couldn’t walk, and severe upper back pain. Doctors have also speculated it gave me the lupus vasculitis which is now a constant companion to my Crohns. It is a drug that seems to work well for others and be catastrophic for others.

  7. Cheryl March 27, 2019 at 3:33 pm #

    Wishing you the best in your recovery.you sure are a warrior and your strength will help you through this.

    I had a very similar experience with Remiicade. After being hospitalized in my 7th year with UC and multiple drug trials with nothing working… I was given the choice of Remicade. It was a miracle drog for me as my body felt so defiant my body was forming a solid stool. I was amazed and thankful. Around my fourth infusion I received an iron infusion as well and my glorious drug came to an end. I had to time my day to do everything before 1:00 pm. After 1:00 my joints hurt so bad it was difficult to walk up my stairs. I was breaking out in hives and couldn’t wait for my next fix. I had a good first week once infused and then the cycle complyiyself. My stools were still good so I had to weigh the UC against my body. My body won!

    I stopped taking Remicade and my doctor wanted me to start humors immediately. Fortymy foctor listens and I didn’t take anything for 2 months. My body restored itself with no pain and I was so glad I listened to my body. Living with UC was less painful than my entire body shitting down on me.

    My Doctor then suggested Apriso and a mesalimine. Since 2015. That has been my routine. Peppery foods, stress and sugar are my triggers.

    I am glad you are healing as I know what that pain is like! It’s intense. My son was 10 at the time and I was not ready to throw in the towel yet.

    Gods blessings as we continue to survive with UC.

  8. Dr. Daniel Winkler March 27, 2019 at 8:16 pm #

    I’ve had continuous knee and wrist pain after being on prednisone. I hope it goes away by year end. I’m thankful I’m off all drugs and my UC is near cured from taking Chinese herbs that have no side effects. So nice to have my life back. I see a doctor of Chinese medicine and he actually cures UC, not just puts it in remission. My friend saw the same Dr. And she has been UC free for over 20 years. I plan on submitting an entire write up when cured.

  9. Juanita March 27, 2019 at 11:34 pm #

    I’m so sorry to hear your story and didn’t realise reactions to these drugs was so common, I was told at the time of my reaction that it was very unusual and rare.

    I was diagnosed 8 years ago and was put on Remicade very early but had an allergic to it by the third infusion. They switched me to Humira which got me into remission within 3 years, which at the time I was grateful for. I developed an intolerance to Humira after 5 years of treatment and I was told it was peripheral neuropathy and it was damaging and killing the nerves in my legs and arms. I immediately stopped it and still have slight tingling and numbness in my hands and legs but nothing compared to what you’re talking about.

    I really appreciate this online community and thank you all for sharing.

  10. Coralie Eichler March 28, 2019 at 12:35 am #

    Hi everyone, Caroline, your story gives me goosebumps and I feel we are just guinea pigs for a medical profession that really doesn’t have the answers for us.
    I submitted my story around 2013 about my reaction to Infliximab (Remicade). I had to go to hospital every 8 weeks to receive this drug via a drip that lasted 3 hours. Each time I had it I developed a more itchy head. The medical staffs’ solution to this was to put Prednisone in the drip for the first 10 minutes. They always sat me in a Lazyboy chair for the duration. Except, the last one I had they put me in a bed behind closed curtains. This was weird in itself. They hooked up the drip and left me. I started to get a strange sensation in my throat and felt that I was about to lose consciousness. I just managed to push the alarm bell before I passed out. Suffice to say I stayed the night in hospital.

    I was told by my specialist at the next consultation that their only option was to remove my colon because I was reacting adversely to every drug they gave me. Methotrexate and Azathioprine were also bad for me. Luckily, I didn’t even consider that as an option for me. I wasn’t unwell. I just kept having accidents and hadn’t had normal bowel motions since 2008.
    Bear in mind that for all those years I was on Pentasa.
    The best thing that happened for me at this point is that I decided to take control of my own life. I started the SCD. Within 4 days I was completely rid of all the bleeding, mucus and diarrhoea. I kid you not. I went from living a life of pain and multiple fast trips to the toilet on a daily basis to no pain and one well formed bowel motion in the morning each day. It was absolutely a miracle. A few weeks later I stopped the Pentasa as well over the course of a few days. I was fine.

    2016, now under a different hospital due to a move, I was bullied into taking the Pentasa again at a higher dose. I was told that now that I had had UC for 8 years I would get colorectal cancer if I didn’t take Pentasa. This was a silly remark because a colonoscopy showed that I had healed my colon by doing the SCD and sticking to it religiously. However, this specialist was adamant. So I took the stupid drug. A couple of days later I was back to diarrheoa day and night and it never came right even though I went off the Pentasa briefly. They just kept giving me different brands of the same drug. Asamax, Asacol. Pentasa can mimic a colitis flare. That is what was happening to me.

    Consequently, I lost my colon and have an ileostomy which they are loathe to reverse. So I am paying to see a specialist privately who has helped another UCer just like me. She had the reversal done in October last year and now is absolutely fine with no UC. Go figure.

    I don’t want to bring everyone down but I do think it is important for us all to share as honestly as we can so that we can make truly informed decisions about our lives and not just accept what the medical profession tell us. They don’t have to live with this disease.

    I am very grateful to Adam for setting up this website giving us a forum to share in a safe environment. As a fellow sufferer he does a great job of being positive for everyone even though he is also dealing with these issues. Hats off to you, Adam. Many other members are also very supportive to new members. I was one of those and really appreciated the support. But you know, this condition does get us down at times. It gets me down a lot because I hate this bag with a vengeance. So thanks for letting me rant.

  11. Denise March 28, 2019 at 5:42 am #

    My son took 1 dose of Humira and had open lesions all over his body and on his testicle which we thought he was going to lose.

  12. Brandi H. March 28, 2019 at 7:17 am #

    I have been on Humira (weekly injections) for about 4 years. I was diagnosed with proctitis which spread to pancolitis and landed me in the hospital within months. I failed all the conservative treatments during that time.

    I’ve been in remission (with occasional bleeding/minor symptoms that clear up with cortisone enema) since a few months in with Humira. I, too, also had horrible knee pains for a while early on in my Humira use. However, I was also on long and high dose prednisone tapers while waiting for Humira to kick in and figuring out my correct dosage. The knee pain would sometimes make it impossible for me to sleep.

    I never attributed the knee pain to my Humira use. I always have thought it related to Prednisone which can also cause arthritis/joint pain as a side effect. I have been on triple strength glucosamine/chondroitin vitamins since. I really have no issues with my knees now. In the grand scheme of things, looking at my UC journey as a whole, this was a small blip, and worth the remission I have been lucky to have.

    I’m sorry to hear Humira did not work for you. I am always thankful for more studies on the drugs and more options coming out – the more we know, the better.

  13. Amy May 29, 2019 at 8:55 am #

    Hi Caroline. I totally agree with you about just how dangerous this drug is. I started Humira last year for severe UC. It worked fine for a few months until I started to have painful joints, pins and needles and constant colds and coughs, my septum even started peeling. It came to a head around 6 weeks ago when I was hospitalized for a very serious opportunistic infection in my colon which spread to my Fallopian tubes. On top of that at around the same time of the infection I became covered head to toes in 3 types of psoriasis which I have never had in my life. A dermatologist has confirmed that it is a paradoxical additional auto immune condition caused by Humira. This drug is incredibly dangerous. It has simply not been around long enough to study the adverse and long term effects properly. Surely anything that lowers the immune system so much can not be sustained as a long term treatment and if it is known to cause paradoxical auto immune conditions what does that mean for Humira patients in the long term, patients taking it for UC suddenly getting lupus and psoriasis, people taking for arthritis getting UC. Good luck Caroline, I really hope everything improves for you. Hopefully the more people that report these awful side effects will encourage better understanding , research and available data to stop people from suffering in the future.

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