I have suffered from Crohns Disease since I was 15, I was finally diagnosed in 1999 & psoriasis appeared shortly afterward. I have taken Amevieve for th psoriasis and Enbryl. Then I had a flare of my Crohns so the Derm. Dr. and GI Dr both decided I should start Humira. Crohns has been very well under control. But I get constant sinus infections, (but w/Crohns it affects mouth to anus as the Dr’s say). My ears constantly bother me. I recently had a bout of pancreatits & the GI Dr says she will remove my Gall bladder if it happens again. Just yesterday i was diagnosed w/staph infection, horrible pimply sores all over my legs. I ache so bad i can barely get out of bed in the morning. Worst part? My son was diagnosed in 2009 Remicade didn’t work for him & now he’s on Humira. I am SOOOO scared. He’s only 14. What did I do?????????

I have suffered from severe psoriasis and athritis since 1997 and in 2007 was also diagnosed with Ankylosing Spondylitis. I am now 47 and started Humira in December 2010. It has been miraculous so far….psoriasis all gone and AS much better. I do exercise and keep my salt intake down which is critical for arthritis. Keeping your waistline thin is also critical. You must have a holistic approach even if you are taking hardcore drugs like this.

I have suffered with severe psoriasis for years. IThanks for everyone sharing their stor have tried health food stores for creams, been to many dermatologists. The Humira I got from the pharmacy is sitting in my frig for the last two days. I have nail fungus and wondering if I should start Humira. I’ve decided to not take it. Yes psoriasis is embarrassing and annoying, but I don’t want lung cancer or other horrible problems.

Hi,

I just want to know if anyone can help us out. We live in Ireland and my husband has Ankylosing Spondylitis. He was on Humira for 5 years and thought it was a wonder drug until last year. He started experiencing numbness and tingling in different parts of his body and his vision started to go all blurry. He was investigated by a Neurologist who says he has a condition very like MS which has been brought on by the Humira. His spin has several lesions, his right arm is damaged peramenently and his right eye has constant blurred vision due to the damage to the optic nerves. Has anyone out there ever been told they have permanent damage for which there is no treatment. If anyone has any comments, advise or help we would greatly appreciate it. My husband is suffering from depression and fatigue associated with this new disease. It is hard enough being told you have one disease but now to have two and to try to manage both is very hard.

My daughter has RA. She took Humira for 4 years and the drug initially worked so well she thought the diagnosis was incorrect! She then had surgery on her leg and was given Cipro for an infection that resulted. She broke out in seeping “hives” all over her body. She was given numerous ointments, steroids several times, and sent to a variety of doctors (allergist, dermatologist, RA doc, and others) none of whom could find the cause or cure for these rashes. She experienced many other problems that are mentioned on this site including the extreme itching, extreme temperature changes, loss of sleep, depression, lack of energy, and finally nearly lost all of her hair. Her RA doc took blood tests to determine if she had Lupus and on September 27, 2011 she was told that it was not Lupus but a reaction to Humira! She has been off of Humira for 4 months and is still experiencing the rashes. She became so bad that she was on medical leave for 3 months. This drug has ruined her life! If there is a class action suit out there somewhere, please let me know!

I have been on Humira for 6 months for Chrones Disease, in December I got pancreatitis and was in the hospital for 4 days with a fever and rash as well. The doctors said the rash was just viral and that it would go away after some time. I am 25 and I don’t drink, smoke and I eat very healthy in fear of flare ups. In January I ended up back in the hospital with the rash being severe and pancreatits. I ended up having to have my gall bladder removed. Whether or not this was the answer i am unsure. Since leaving the hospital the rash has gotten worse. i am covered from scalp to toes. I saw a dermatologist who said it was psoriasis, and then went back and another said that it was not psoriasis and that it was extreme dry skin. The rash is raised and looks like pimples, it is very itchy and sometimes can burn. I have doubts about the dry skin diagnosis. i have tried all of the creams I have been given and nothing has worked. Now I am having ligament pain and my lymphnodes are swollen and sore. I am fearing the worst and am praying for the best. I truly believe that the humira has caused this. My GI doc told me to stay on it because they are trusting what the dermatologist has said. Knowing my body, I have taken myself off of it and I believe that something very serious is going on now from it. Very scared 🙁

After reading all of these posts. My 20 yr old son will stop his Humira for Crohns. After his first 4 shots one week later he was vomitting for 3 days. felt hot with chills but tempeture was always under normal like 97. They said it was flu. After next 2 shots got sick feeling nauseated 7 hrs later and threw up again. Missed school. Doc says still take shots ? Took one shot with no symptoms and feels fine however were not going to wait for something worse to happen. Medical Pot it is, and Alhoe juice, and coconut macaroons helps prevent diareah. I wish you all good luck as well !

Ignore Dusty from September it was probably a big pharma scum making a last ditch effort to make a horrible drug like Humira look good and people look dumb. Typical. Anyways…. I was diagnosed with chron’s 5 months ago, the specialist put me on Entocort Which was doing pretty good, I for once, in many years started to feel better. But all of a sudden the specialist wanted me to try Humira. I said okay not knowing any better. All I can say is “what a mistake”! First, The injections for me are extremely painful, Second it’s been a month and a half and I am not getting any better I actually feel worse. Side note: when I was taking the Entocort I felt really good after one week. Third I now have two itchy bumps where I gave my self my last injection. It won’t go away. Third I have a constant stuffy nose…..shall I go on! Humira is junk! I have read all the post! 9 out of 10 people complain! That should tell people somthing! I have an appointment with my doctor next week and I am going to tell them what I have told you here and if they don’t take me off Humira and put me back on Entocort I am leaving and finding a Specialist that will listen and that cares about there patients more than themselves. I suggest anyone having similar troubles with Humira and with a Doctor that doesn’t listen to leave! Find a better doctor, they are out there!

I should also add that my daughter also developed strange skin lesions 3
different time while on Humira. A mosquito bite turned into cellulitis and all 3 lesions caused her limb to become red and swollen. She needed to be on antibiotics each time and dermatology could not identify what caused the lesions. They were cultured and all negative for organisms, and biopsy came back negative? I feel these lesions were directly related to the Humira.Also, my daughter has had pretty aggressive CD and required a bowel resection at age 13 for an obstruction secondary to a stricture. Kim

In 2007 I was suffering from recurring intestinal infections, diarrhea, and went on to develop a perirectal fistula. I had a colonscopy on Nov. 1, 2007 and was diagnosed with Crohn’s Disease. My GI doctor prescribed Asacol, and along with watching my diet, the intestinal problems improved to where they were bearable. Unfortunately the pain and drainage from the fistula became severe. I took flagyl and loratabs for about 8 months and when this no longer worked I reluctantly agreed to begin Humira in Feb. 09. The Humira did a excellent job clearing up the fistula and seemed to put the Crohn’s in total remission. Until October 2011 the only side effects were fatigue, nausea, and eczema, which seemed worth it, considering. Suddenly it seemed I developed a severe allergic reaction to something, it affected my whole body. The worse part was I couldn’t breathe. I felt like I was drowning, spitting up mucus constantly, muscle soreness, pain in my knee joints, blurry vision, and memory loss. I waited for things to possibly clear up on their own since I hate going to doctors. I went to an urgent care clinic on Dec. 31, 2011 to receive treatment for my breathing difficulties, and received steroids and antibiotics..Since I took no other meds except benadryl and mucinex to help me breathe I suspected the Humira and took my last shot of it in early Jan. 2012. I am feeling better every day now, although I still have some shortness of breath, mild pain in knee joints, forgetfulness, and blurry vision. I will go to a doctor again when I HAVE to.

I tell you all these stories scare me. I dont know what to do. I am on humira and have been for 4 years. I was diagnosed with chron’s in 99. I am worried because in the last year I have found out I now have deteriating disks. Spinal stenosis, palmers pustular psoriasis, trimmers, studdering speach. I have had to start today on heart meds because I have been having chest pain. Extremly high blood pressure, fatigue, I have been getting infections in my knees. I have numbness and tingles in my hands and feet. I wake up drinched in sweat. All my mussles hurt. I have trouble walking it is so bad and in january I had to have a hystorectomy. I am only 33. This couldnt be how I am supose to spend the rest of my life. I need help and like everyone else I am sick of feeling like a ginny pig

Mu husband took Humira from February 2009 – June 2009- 7 shots in total for psoriatic arthritis. On July 6, 2009 he went to the hospitali for what seemed to be a heart issue. After several tests done in the emergency room, he was hospitalized because a chest xray had revielved a mass on each lung that was not present in a chest xray done in the beginning of May. After a bronchoscopy coming back negative, he was told he needed a lung biopsy. He came out of the hospital in July 21, 2009 oxygen depended- 2 short weeks after the first initial complaint. He had his lung biopsy on July 28, 2009. He received his results on July 31, 2009.

His diagnosis was Interstitial Lung Disease- Idiopathic (no known cause) Pulmonary Fibrosis- Moderate. Doctors knew he was on Humira. He was told it was irreversable and that a lung transplant was not in the immediate future, if ever. It would be years, if not decades before he would need something like that. On August 2, 2009, he was put into a rug induced comma and placed on a respirator because he was unable to oxygenate from the canular or mask at 100%. August 7, 2009, I was told if he wasn’t transfered immediately to a lung transplant facility- he was going to die that day.

He was air transfered to the University of MD Hospital and placed on ECMO (heart- lung bypass). he was never put on the list for a lung transplant even though he needed one to survive. He was never strong enough to be put on an operating table. The entire time he was in a drug induced comma.

August 31, 2009 he woke up from under the aesthesia he was on while undergoing another bronchoscopy to check for infection. The hospital was having a hard time oxygenating him on a respirator. He was still not placed on the lung transplant list, even though at the time he was the sickest man on the eastern seaboard. On September 7, 2009- My husband died!

An autopsy was done and the cause of death came back acute interstitial pneumonia- the most severe form of pulmonary fibrosis- Still considered idiopathic.

I have been on humira for almost a year for Crohn’s and started developing fatigue, weakness and small hand trimmres. The tremmer got much worse. after several test, MRI’s and almot two weeks in the hospital, all the doctors are pointing to humira. My vision has gotten much wose, seeing double and blurred. I have been off Humira for over 30 days yet the affects are still there. According to Humira they have no idea how long it will take for the affects will last. Has anyone else had these types off side affects. I am not able to walk on my own, using a walker due to the dizzyness and blurred vision. I am not able to go to the bathroom on my own. Steroids have been increased to 60mg to kick start my brain to talk to my body like it used to. This is so frustrating to not have control of my body.

All of you who have been getting side effects from the Humira and want to get off the drug, please find a Homeopathic Doctor who can help you. A Homeopathic doctor has as much education as your regular MD, they have just gone into a field that looks to treat your illnesses with more natural products that don’t harm you like the big money making drugs that Big Pharma puts out to kill you. Many thousands of people have been using Colloidal Silver for their ailments with great success. It is anti fungal, antibacterial, antitumoral, antiviral. There is so much more out there to really help you but you have to do your homework. God bless you all.

I’ve been on Humira for a little over 2 years now for chronic psoriasis with associated arthritis. I’m very pleased to report it’s changed my life, I’m free of psoriasis for the first time in 20 years (arrived with a vengeance when I was 21, I’m 41 now) and pain and swelling free in all 9 joints affected. I had days I couldn’t push past the pain to even stand up, I really thought the rest of my life was going to be that way.
At risk of sounding fatalistic, I feel the quality of life and the living I’ve crammed into the past couple of years thanks to Humira outweighs any and all risks. I was already the living dead, And for however long it remains effective, I’ll always be very thankful for the life it’s given me.

My husband had ra. He was on remicade until he had a severe skin reaction. He was then put on humaria. He developed nerve damage in his arms and legs eventually leading to using a cane, then a wheel chair. A fungal infection that eventually lead to the removal of his toe nails. Several bouts of broncitus and phemonia. His hair fell out, his feet and legs swelled. He had rynards syndrom. He went from no cancer in april to in oct (6months) terminal lung cancer that had spread to his liver. Dispite chemo and radiation, he died in 6 months.

I was diagnosed with crohns in 1995 after years of mystery problems. I started humira in January 2010. Within a month i had a severe sinus infection, I ended up having surgery the following month and the doctor said it was full of a fungal infection. Months of sinus problems followed, then I got hives, first in the folds of my arms, then my neck then under breasts and down legs, but they were not itchy, just red and hot and inflamed.I came off Humira for a break, and had another opinion, was told lucky to get such a great drug, and as crohns symptoms come back so quickly went back on humira. Took antihistamine for hives. Then followed months of ok but not ok, I had tingly arms, weakness in legs.Terrible Hayfever. Then pain started in toes, the toes would go bright red and hurt like burning pain, then in my big toe, then my ankles and knees started hurting like they were on fire, I couldnt sleep thru the pain, nothing took the edge off it, then pins and needles from knees to toes, then freezing icy cold pain. Went to GI, she couldnt understand it (dont doctors learn about side effects?), then GP, then Rheumy, who said didnt know what it was, ANA titre had been 1:320 for some time, but was told this was ok. Blood tests for all sorts of things, no diabetes, nothing untoward. Now waiting for MRI, as cost is so high, and then to see neurologist to find out if this is Transverse Myelitis? I have pain in my lower back, I am not paralysed, the pain is mainly from my knees to toes.Soles of feet hurt. I have no idea what is going on, and I just want this to end. I just dont know if I could say to anyone that the few years with Humira were worth it, I had many side effects and now this. The icy pain in my legs drives me insane during the day, then the sensitivity of my skin and pain in my legs drives me nuts at night, I am taking Cortisone and low dose endep 20mg, for pain breaking. I read all of above, and I dont understand how the drug maker has not been told to stop making and selling.

I have read ALL of the above. I am concerned. My hubby was diagnosed with AS in 2009 after years of mysterious pain. He tried Humira, but it didn’t last long for him. He now takes Remicade (the highest dosage the home nurse (who comes and gives it to him every 6-8 weeks) has ever seen. He told me about a month ago that he felt a couple of lumps in his neck but they didn’t hurt. After pestering him for a month, he told me they went away on their own and he didn’t think they were “anything” because they didn’t hurt.

To those out there who know, do the lumps that your loved ones felt hurt or go away?
Thanks! God be with all of you.

I have been on Humira for 3yrs now. I have severe Psoriasis I started with Raptiva then when that drug was stopped they placed me on Humira and the drug worked 100% There no no signs of psoriasis at all but when I get sick or have surgery I have to stop the use. When I stopped the use of Humira, I noticed I was getting joint pain. The Dr did blood work and found out I had Arthritis forming. **This past Wed my Dr was upset with me because I couldn’t keep my appointments. I lost my job, I had no money to pay for a phone card, I had no gas to travel to a different city to see him. His office was booked in my city (he visits wed only).
I did have a ride down there but called in and re-scheduled because a woman with a newborn baby had the front drivers tire actually snap off the car so we assisted her. Now I am filled with hives.

I have a painful and debilitating disease named Hidradenitis Suppurativa and was having a cyst removed about every two weeks for about 4 months. This was a painful way to live and there is no know cure for this. I was seeing a dermatoligist since I was about 15 and diagnosed in 2009 with this. I have had to take just about every know antibiotic since. I was very desperate to have this contition releaved, the dermatoligist told me that they could try Humira and that they have heard of cases that relief was found, not a cure, but relief. I was at a bad spot with this so I agreed to be a guinea pig. I took the injections for a month and had a reaction, not sure it was the Humira, I was taking other medications also. I stopped using it for a month, the symptoms went away and started using Humira again. I was seeing the dermatoligist every month to moniter my vitals, used it for 6 months. During the time I used it, I felt sick most of the time, started getting a spot on my left ankel that the skin looked to be infected or something, the doctor gave me cream of some sort for it. After 6 months of using it with the dermatoligist wanting me to hang in there, I stopped the injections, there was no relief and nothing was getting better with my HS. I lost faith in the dermatoligist. I about a month or so I started getting the lumps on my ankels that were itchy, and if I scratched them the skin would just fall off, I developed a rash in my groin that will not go away. I had to visit a total of 4 different doctors to help me with this new condition and they prescribed antibiotis, 6 or so different types of creams, and nothing is helping me. I now have what look like cherrys from sliding into home plate in a baseball game all over my legs and now its spreading up to my stomach. They have now become painful as hell. I also have finger nails on my left hand that have deteriorated and are not growing back right. I have had a numbing feeling in my left are and hand since I was taking the Humira, I need help for this and no doctors have been able to help as of yet, I anybody else is experiencing these symptoms, please let me know at mca1967@gmail.com. I am ready to call an atorney to help me get the the bottom of this, the doctors seem to act as if they don’t want to help, HELP !!!!!

My doctor put me on Humira for my Crohn’s disease in November. By January I was experiencing painful swelling in my wrists. I went back to my GI who insisted on another colonoscopy to rule out a Crohn’s flare.Everything looked good so he referred me to a reumatologist. He told me to keep taking the Humira after I asked if the pain and swelling could be because of the Humira. It took 4 months to get an appointment with the specialist. Meanwhile my symptoms were getting worse and included swelling of the hands, feet, arms, legs, and knees. And pain in many other places like my wrists, shoulders, upper and lower back, and fingers. I also have absolutely no energy and I throw up at least 3-4 times a week. The specialist gave me Celebrex for my “aches and pains”which made my throat close up. He told me to keep taking the Humira because the initial blood tests didn’t indicate lupus. I told him that I had been looking on the Internet and found something called drug induced Lupus. He said that was an interesting theory and how would I feel about stopping Humira. I finally had to go to the emergency room because my forearms were so swollen they looked like Popeye. The ER Doctor gave me a couple of Percocets which barely even take the edge off of the excruciating pain that I am in most of the time. My next visit to the Doctor prompted one more blood test. It was positive for drug induced lupus and still a maybe for lupus. I stopped taking the Humira of course, but that was two months ago and my symptoms have been getting worse, not better. I’m turning to acupuncture and alternative medicine now and will never take a biological medicine again. In the mean time I feel like a junkie trying to get pain medicine. It’s like the doctors don’t believe me or just don’t care.

I have been taking Humira for 8 weeks and it was wking but not at this time I have crohns and just can’t even believe it, misdiagnosed several times and yes come to find out I have had it. Well anyway’s I have severe fatique and lymph nodes in my leg and they hurt!!! I have had them before but not really in leg and have also had some removed at one time. This is very pain full in my legs and since we either inject in leg’s or stomach be careful everyone it might lead to something in future. we all have to watch what we do to get better. Thanks so much!!! possible surgery for me soon due to Crohns. Take care everyone.

my mom hs been on humira for 2 plus years for ra. was just hospitalzied for a week due to high fevers. have now come to find out that she has lung cancer. if you are reading this and are on humira, stop it now. my mom is otherwise healthy and now has to pay the price for taking humira, we should have looked into this before letting her start. i blame myself and now instead of suffering with ra she has cancer.

52 yr. old female with Crohn’s. started Remicade in 2002,Asacol and Immuran.Also Steroids and methotrexate used with infusions. I did not even know I was on methotrexate untill 6 yrs. later! I had a bad adverse reaction to the steroids and can never have them again. In February this year switched to Humira after feeling worse after Remicade Infusions. Okay in the beginning just feeling tired for a couple days after each injection. Then head-aches and nausea and feeling brain foggy. Not myself. Then the rug got pulled out from under me 6 weeks ago. I did the injection Monday around 8am. By 3 that afternoon I had to lay down because of NO energy. I woke up several hrs.later bathed in sweat and every muscle throbbing in awful pain. I drug my self to the bathroom and back to bed. I stayed 2 days like this. Then I started getting a little energy so I could move slowly only because of being so all over body sore. I walked out side and waved at my GrandSon and I felt a burning searing pain in my upper left arm. My muscle tore from waving ! I started rubbing my sore muscles and to my shock I feel like little marble size bumps in different areas. Painful to touch. I went to see GI next day and I had also lost 7 lbs. through those days. I was dehydrated and felt like my thinking process was slowed down. Stuttering and nothing wrong with stuttering except that I never did before. That doctor told me to try Benadryl with the next Humira injection. I told her I will not risk my life. What if the next reaction is deadly ? She just looked at me and said well the Main doctor is out of the office untill the middle of Dember so he will decide then if he will change your med. I said I am not taking Humira again. She told me I could experience some other problems just stopping the Humira. But thankfully I have not felt anything as bad as that reaction. My muscles are slowly recovering except for the left arm and right calf taking more time. Hope it did not leave permanent damage. Also she felt the little marble size lumps in my arms and never even acted like it was news worthy. I still have them and I am going to my Family Doctor with all this and see what he can do for me. I mean a scan or something. Total weight loss 16 lbs. since that last shot 6 weeks ago. Food smelled awful and even water tasted nasty. I am finally get my taste and smell back to normal. Also I was having awful nosebleeds untill I stopped the Humira. So sorry for everyone’s loss of loved ones and all the physical and emotional pain involved. Oh and the GI wanted to send me to a Rhemy, said it’s common with Crohn’s patients, but I would not give in and I said I Know the Humira did this to me.

I have been suffering from Crohn’s since 2005 (flare ups would come and go). A multitude of tests would always come back fine. I was finally diagnosed with Crohn’s/Colitis in early 2011 and also have migrating arthritis when I get flare ups. I went thru all the concoction of meds…….asocol, buscopan, azathioprine, prednisone and a few others that I cant even remember their name. Nothing worked except for the prednisone. It seemed to take my flare ups down, but when I started to taper of the prednisone, my Crohns symptoms would flare back up. I was then told by docs that I am ‘steroid dependant.’ Since prednisone is horrible for long term use, I was given the option of Remicade or Humira. I chose Humira due to an active life style and that I can inject myself in the comfort of my own home. I started with 4 shots of Humira in one day. The next day all of my Arthritis pain was gone and I could walk again pain free. I then began a one injection every two week plan> I did start seeing side affects about four months later with rashes on my feet, palms and wrists. I also get patches of rashes on my legs that come and go. I have been to my docs and specialist that told me it is psoriasis brought on by Humira. My dermatologist said it is about a 4% chance that Humira gives psoriasis because one of its designs is to cure psoriasis. She gave me a bunch of creams that didnt work at all, so I stopped taking them. I am comfortable with living with the psoriasis at this time, since it isnt to bad. My main concern is the long term side affects of taking Humira. I am 34, have been on Humira for over a year and am supposed to take it for the rest of my life. It has taken away my Crohns flare ups, but at what cost down the road. I dont want to leave my children early so will be trying to plan a non chemical/pharmacutical way. If any one has ideas, or info on long term affects of Humira, I would be glad to hear. My thoughts and prayers go out to all on this site who have lost and are dealing with these horrible issues.