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Side Effects of TNF Blockers: Enbrel, Humira, Remicade

For many patients TNF blockers like Enbrel, Humira or Remicade are miracles. For others, such drugs are menaces. Balancing benefits vs risks is challenging.
Hands With Arthritis

Most drugs are double-edged swords. In other words, they have the potential both to help and to harm. But some medications have sharper blades than others. TNF blockers are great examples of this deal-with-the-devil dilemma.

Messing with the Immune System:

When the immune system detects a potential problem, it goes into action and produces a compound called tumor necrosis factor (TNF). This is an important part of the inflammatory cascade that is a valuable reaction to infection.

TNF has anticancer and antiviral activity. It also helps control and contain other microbes by recruiting inflammatory cells to hot spots of infection. TNF can encourage tumor cells to commit suicide. (“Necrosis” means cell death.) That’s a good thing for the prevention and treatment of cancer.

TNF also helps mobilize and regulate our natural immune cells. These white blood cells (macrophages) form the first line of defense against a range of bacteria, fungi and viruses. Without TNF, we would be in big trouble.

If the Immune System Gets Out of Control:

In some cases, however, the immune system goes awry and attacks body tissues. These autoimmune conditions, such as Crohn’s disease, ulcerative colitis, rheumatoid arthritis, psoriasis, ankylosing spondylitis and psoriatic arthritis cause a great deal of misery. They can be quite difficult to treat.

TNF Blockers to the Rescue:

Since just before the turn of the 21st century, doctors have had a new set of medications in their anti-inflammatory toolkit. TNF blockers such as Cimzia (certolizumab pegol), Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab) and Simponi (golimumab) are used to treat a variety of autoimmune diseases. For some patients, they seem to be a miracle; for others, however, they are a menace.

TNF Blockers and Rheumatoid Arthritis:

Sarah reported her positive experience with Humira:

“I’ve had rheumatoid arthritis [RA] for nine years and it is incredibly painful. My work requires writing, so I need my hands to function. I have managed to keep my job even throughout the worst flares when my hands were so bent they were like claws.

“Two years ago, after I’d tried numerous medications that did nothing to relieve the pain, I started on Humira. It’s completely changed my life. Most of the time you’d never even know I have RA. Flares are practically unheard-of and my hands look completely normal, no longer like claws. Even the fatigue has pretty much abated. I’ve had no side effects. All in all, for me it’s been a miracle cure.”

PMK also got relief from RA:

“I have had RA for 39 years having been diagnosed when I was 32. Over the years I have taken Ascriptin (asprin w/Maalox), Naprosyn, gold shots, penicillamine, Feldene, and prednisone, to name a few.

“My condition continued to slowly go downhill. Until 1999 prednisone was the only drug that made a day-to-day difference. Then came Remicade. My life was transformed and returned to me.

“I have been receiving Remicade treatments since it was approved in 1999. The swelling and joint destruction have stopped. The damage was done earlier and resulted in over 14 surgeries. I am off prednisone and work part time. Actually I worked part time from 1973 until 1998.

“Now I teach arthritis water aerobics and love every minute of it. There are side effects from the drug, but for me, quality is more important than quantity. Those of us with RA or any chronic condition need to take control of our lives and live to the fullest!”

TNF Blockers for Crohn’s Disease:

When the immune system gets out of whack and starts attacking the lining of the digestive tract, people suffer terribly. Symptoms can include severe diarrhea, rectal bleeding, abdominal pain, fever and fatigue. The cause of Crohn’s remains mysterious, but it is clearly a condition of severe inflammation.

People with Crohn’s are often desperate. When all else fails they have major surgery to remove large sections of the inflamed bowel.

Linda has had a good experience with Humira:

“I’m 70, I have Crohn’s and I take Humira. I have had absolutely no adverse reactions, not even a headache. Most people take these drugs with little or no discomfort, let alone the serious reactions. I’m not discounting these experiences, but don’t assume that these reactions are typical.

“To say no one ever has a bad reaction is misleading, and to refuse to help if you are in pain is just coldhearted. I’m not a doctor, of course, but we are all different.

“Odds are, I will be fine. The odds of complications from the diseases are certain. The odds of complications from the medications are small. I am blessed to have good doctors.”

TNF Blockers and Psoriatic Arthritis:

Lou from New Mexico got relief from his psoriatic arthritis:

“I developed psoriasis and psoriatic arthritis. Very little helped until I was put on Enbrel first, then Humira. Humira has put both the psoriasis and arthritis in remission. Fortunately, I’ve suffered no ill effects from it. I have my blood monitored regularly to ensure no problems are developing.”

Skyds also benefitted from Humira:

“In January 2013, a rheumatologist diagnosed me with psoriatic arthritis. My inflammation rate tested at 94%. I was in severe pain. My finger joints appear to be permanently impacted by the disease.

“I was placed on Humira injections every other week, plus I take methotrexate one day per week plus daily folic acid. Humira gave me my life back. I am able to live a normal life, though I do get tired easily. Although Humira has a lot of warnings, my rheumatologist stated if I stop the medications, I would become totally bedridden within a year. I am willing to roll the dice to live a fulfilled life now and take my chances with a later diagnosis which hopefully is also treatable with modern medicine.”

The Dark Side of Humira:

In addition to rheumatoid arthritis, Humira is approved for treating Crohn’s disease, ulcerative colitis, plaque psoriasis, psoriatic arthritis and ankylosing spondylitis, a severe inflammatory arthritis of the spine. Many people get great benefit from taking it to alleviate the inflammation that causes terrible symptoms and suffering. Some, however, develop serious reactions.

One reader shared such an experience:

“I have rheumatoid arthritis and was on Humira (a self-injected biologic medicine) for three months. Then I had a severe skin reaction, with burning, weeping eczema and hives. I needed to take 40 mg of prednisone a day to calm it down. Eventually I was able to reduce the prednisone to 5 mg a day, but when I tried to stop, my symptoms flared up again.

“I then started taking Enbrel, another biologic, and again suffered a severe skin reaction. My face was covered in eczema and my lips were cracked and bleeding.”

Bob also had a severe skin reaction:

“I took my first Humira shot and one week later I woke up with a whole body rash. This rash progressed for two days. It itched and burned and it made its way onto my face giving me a butterfly rash. The slightest amount of sun created burning like I had a bad sunburn.

“I went to the ER at 1:30 am and they didn’t know what to do, so they told me to take Benadryl and sent me home.

“I went to a urgent care facility and the doctor there gave me prednisone to help with the rash. It’s a week later and the rash has cleared some but I still have it. I felt all alone during this time. When you watch your body being attacked by a foreign substance, it makes you really evaluate your reasons for subjecting yourself to such a risk. I will never ever take a drug like this again. Since this has happened I am trying to share my story because this can happen to anyone. I have read a lot of bad stories with this since my little ordeal; don’t think you’re immune to these same issues.”

TNF Blockers and Infections:

Even more alarming are warnings about “serious infections that may lead to hospitalization or death.” Because TNF is part of the body’s way of fighting off infection, it doesn’t come as a surprise that blocking this compound could allow infections to rage.

This reader walks a tightrope:

“Chronic pain control is close to my heart because I have rheumatoid arthritis. I am on Humira. I have been on methotrexate, gabapentin, Aleve, Vioxx, Celebrex, hydrocodone, tramadol, supplements, fish oil, gin and raisins, turmeric, aspirin, grape juice and Certo, muscle relaxers, Tylenol, and others including Prilosec for heartburn. Despite the pain, I try to maintain movement and keep working.

“Pain is still an issue. I definitely need relief but want to limit side effects. Humira seems to be slowing the progression of my disease, but makes me much more susceptible to secondary infections. An upper respiratory or urinary tract infection is far more serious now and makes me much sicker than it used to. It also takes longer to get over the infection. I hope that I can continue to use the medications safely since I am 65 and live alone.”

R.J. comments on Enbrel and infection:

“Enbrel almost killed me. Watch out for a fever. If you develop one, call you doctor right away or get to the ER.

“Enbrel caused me to get an abdominal cyst that I was unaware of until it started spilling bacteria into my blood stream, causing sepsis. The infection attacked the mitral valve in my heart. I ended up having open heart surgery three months later.”

J.G. reports on Remicade and urinary tract infections [UTIs]:

“I too was diagnosed with RA and started Remicade infusions about 4 months ago. I am going for my 5th infusion next week. The last infusion I had I was sitting with the IV hooked up and felt the UTI come on over the period of 2.5 hours.

“The concern is that the Remicade is suppressing my immune system and the UTIs will become more frequent. When you have a UTI or are on an antibiotic, you are not supposed to get the infusion (postpone) which results in more RA pain. Ultimately this is a NO WIN situation.”

TNF Blockers and Cancer:

Cancer is another concern. Lymphoma and other malignancies have been linked to the use of TNF inhibitors.

Russ and prostate cancer:

“In 2008, I was in agony with joint pain. I tried all the NSAIDs and also took prednisone for weeks at a time with no effect. Finally, after referral to a rheumatologist, I was diagnosed with RA. I was started on methotrexate and Remicade. It was my miracle drug with no pain or symptoms that let me live a normal lifestyle.

“Yeah, I read the side effects and warnings, but to me the trade-off was worth it. Flash forward to 2016 and I have been diagnosed with prostate cancer which has spread to my bones. My concern was having to go off the Remicade which was my lifesaver but was a no-no with cancer treatment.

“Did treating my RA with Remicade cause my cancer? It is what it is, and if I had to do it over again I would do the same just for the quality of life I’ve had.”

Marianne on Enbrel:

“I have rheumatoid arthritis. After being on Enbrel for 3 months, I woke up one morning with no pain. This continued for a few months.

“Then I got a terrible infection in my womb. The doctor scheduled a hysterectomy! I stopped Enbrel, and 3 weeks later, the problem had disappeared. I refused the surgery.

“Six months later, I developed breast cancer, and nearly died. Enbrel was my last resort. Each of the meds have caused me terrible side effects. The meds killed a friend of mine. I nearly died on more than one occasion from these meds that are supposed to help us. This is not quality of life, it is Russian roulette.

“Don’t fool yourselves. I now have some problem with both my lungs that has yet to be diagnosed; I often feel like I am drowning in mucous. Rheumatologists are not recording all the incidents of breast cancer.”

Cathy on Remicade and lymphoma:

“My story is about a rheumatologist who was treating my husband with Remicade, a drug used for rheumatoid arthritis. It’s a fact that Remicade can and does cause lymphoma, which is exactly what happened.

“The doctor took no precautions to monitor my husband for any serious side effects relating to the start of lymphoma during the period he was on Remicade. Needless to say and it’s no surprise to me that this doctor denied any wrong doing. In other words, it’s still a ‘mystery.’ I know what happened.”

The Bottom Line on TNF Blockers:

Patients and their doctors need to carefully weigh the pros and cons of these powerful drugs. For some, drugs like Enbrel or Humira are miracles, dramatically improving their quality of life. For others, the complications can be disastrous. Never forget that double-edged swords can cut both ways.

Remember that TNF blockers may make people more susceptible to infections. That includes tuberculosis, flu, urinary tract infections and colds. People taking such drugs are more vulnerable to lymphoma and skin cancer. Anyone with multiple sclerosis should avoid TNF blockers, and people with heart failure should stay away as well. At the first sign of any skin reaction, contact your physician immediately!

Share your own story about Cimzia, Enbrel, Humira, Remicade and Simponi in the comment section below.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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I suffer from arthritis and am on 4mg prednisone and once a week methotrexate if pain continues. Am also on Tylenol, codeine and relafen. I still have pain now and then. At present I have hip pain, and xray shows arthritis in hips. My doctor once suggested humira. When I enquired about the cost, it’s so much, $1000 for a month’s supply. Will the price go down after few months supply or it will be the same throughout? I need some suggestions if someone is on this treatment, please.

My Daughter is 20 and the Doctor wants her to start Humira for microscopic colitis. Has anyone you know her age that has taken this drug? I am worried about cancer side effects. So far no medicine has helped her.

Just received my first starter pack of Humira for psoriasis, psoriatic arthritis, and HS. I am honestly miserable at this point in my life I have so many patches of psoriasis plus plaques covering 100% of my head very thick and lesions from the HS.

I want Humira to be my cure like every one here. But, I am terrified of the side effects. I was ready to take it but, now it is here I am not so sure.

Is clear skin, lessening of pain,and quality of life now worth possibly getting cancer later and possibly dying?

Ugh… any help would be appreciated!

I’ve used Humira Enbrel Remicade initially they all worked for me but I developed severe psoriatic arthritis during the treatment of the skin lesions that covered my body over 89% I’ve had this condition since I was 5 years old the first quarter sized psoriasis forming on my knee cap. That was in the seventies and they treated psoriasis with coal tar.

I felt that adults go to the doctor and treat themselves when my arthritis got really bad I switched to Remicade infusions and it was a miracle for me I got up out of that chair able to move bounce jump and was clear for the first time in years then taltz came out and they switched me to try that because I lost a lot of weight and cleared up holy clear skin batman!

Didn’t help the psoriatic arthritis though so they put me back on Remicade even though it was dangerous because you can have a severe allergic reaction every single time you use it even 2 years in. I knew it’s not a good drug all the time for everyone but was desperate for the pain to stop! fast forward to today August 23rd 2017 and I’m suffering from brain demyelination – 5 lesions scarring in Feb.

MS symptoms that are very Progressive and the neurologist here in Fort Worth Texas have never seen anything like this obviously they stopped remicade – problem is >I have not had medicine fir 6 months.. yesterday cocentyx started. they just keep telling me I’m not going to die but I’m scared I wish I had just not took those drugs please please get an MRI before you start any tnf blocker if you have anybody in your family with Ms I do not have anybody in my family with MS but it’s likely that that’s why I got a wheelchair delivered at age 47 last week. Where do I go from here? UTSW for study probably. Neuro 2nd opinion sees me 8/31 to read latest MRI results and either quits me or helps me.

Please know that these drugs help. so many.ppl only 4% Suffer this side effect. Choose wosely because there are safer drugs out there. If we kill our immune systems we die. If we kill them just enough sweet relief.

I finally found hope in Enbrel after trying natural methods and 3 other biologics! It seemed as I had my life back…not totally by any means but enough that I had a quality of life again and I was so happy. I still dealt with pain and other symptoms, but they were more controllable. Then it began. A sinus infection. So, I would stop the injections until antibiotics knocked it. Within a few months I developed bronchitis that took several weeks of being truly down. Then came asthma and a sensitivity to odors of just about every kind. Asthma then ruled my life. Then more sinus infections…stopping enbrel…taking antibiotics for weeks at a time to rid myself of the terrible pain between my eyes. I was off Enbrel more than on.

Truly, I am at a difficult place in my journey as the Enbrel was such a help. I want to stay on it crazy as it sounds after all thus. Now I am infection free, have asthma under control but RA pain is stealing my life totally again. You see I have a severe fear to continue ‘trying out’ more different meds as I have such a high sensitivity to drugs (my body often resists them by causing severe difficulty in breathing, etc.). So, I know enbrel & how it helps and even after all this I am considering taking it again as it was so successful, but I don’t know how to control the sinus attacks. I fear that other biologics likely will be more serious in side effects and have a resistance to putting myself out there to experiment with them. Anyone else experiencing similar issues with Enbrel? If so what was your next step? Any assistance will be greatly appreciated. Oh, I suffer from Trigeminal Neuralgia and when sinus is affected it goes out of control. This is a lot and I genuinely will appreciate thoughts from others. Thank you.

Having been diagnosed with RA 7 months ago, my immediate reaction to how I chose to deal with this, was my first thought. And becoming another statistic from western medicine disease management is something I will have no part of. Not to mention the ongoing costs of continued dr appts, x-rays, and drugs was a huge thorn.

It took me over 6 months just to pay off my balance with hospital entity from my first and last appt (same day) with the RA doc. I had already done lots of research (and continue to do) on alternative (natural) solutions. I also began seeing a naturalpath physician here in my town.

She has been a breath of fresh air. Once again, it is deeper than just putting a bandaid on a bullet wound. Autoimmune diagnosis’ seemingly are remaining on thr radar, and thus the vicious cycle of western medicine goes on. I choose not to become another statistic in this stance. I suppose my high tolerance for pain is a gift all its own.

Exercising, changing bad diet habits, and becoming one’s own advocate for their health (life), is my way of taking the bull (RA) by the horn. Shutting down our immune system, in any form, is deadly.

I have used ENBREL since 2012 AS WEEKLY 50 mg. In 2014 I found I had thyroid cancer. They removed my thyroid, and I stopped the ENBREL. I take sulphazaline plus Celebrex for pain in my lower back. ENBREL does work but a possible link with cancer is this medication’s double edge. I also have prostate enlargement and high PSA. Possibly they need to improve on the research on those medications.

Hi, Lisa. I have something of a similar experience, as I was on Enbrel for about three months and was stating to feel better. I have reumatoid and AS. It seems whenever I’ve had a reaction to arthritis med it attacks my respiratory system in someway. I started with a sinus infection that quickly settled behind my right ear drum being full of fluid that would not drain. 4 doctors and three antibiotics and steroids later ear resolved itself . I still, however, was left with a cough and a lot of sinus drainage. I woke up this morning in terrible joint pain and I feel like I’m getting sick yet again. I haven’t taken enbrel for about 2 and a half months! How does one get their immune system back ?

Have had 2shots of Humira every other week .I have been so sick that I was in the emergency room and all they could say was it was due to the Humira.I just wondered what damage it has done to my body?I am more sick now than with RA.No more Humira for me.

I was diagnosed with RA two and half years ago, and the moderate pain and joint destruction have remained the same throughout that time. I’ve taken methotrexate and prednisone since the onset, and my rheumatologist has tried many biologics to get my disease under control. The first was Cimzia.

After only 3 doses, I stopped it due to sudden and severe muscle pain. TNF blockers are not to be given to people with MS which I don’t have. However, I have permanent muscle and nerve damage from taking simvastatin, a cholesterol-lowering drug. I have enough muscle pain already. I don’t need any new agony presented by a TNF blocker.

I have been taking Enbrel since 1998 for RA. It did give me a better life, with less pain. I was told of the risks, but when you have severe pain, you’ll deal with it.

Forward to 2015, after a routine mammogram and further tests, I was diagnosed with CLL, Chronic Lymphocytic Leukemia. What a shock. But the doctor said it is a slow cancer, with no real cure. So treatment is “watch & wait”. And I have no symptoms and refused to stop Enbrel.

I have also had a major issues with wound healing after a TAR revision in 2015. This could be due to Enbrel and/or CLL.

It’s a terrible position to be in. Without Enbrel, I’d be in severe pain, but now have CLL and healing issues.

These drugs should not be taken for minor conditions often depicted on commercial ads. Drugs like Humira and Enbrel are given in higher doses because people do not like injections. Perhaps they should be given at lower doses to avoid infection or undesirable side effects. This approach should be something to consider, especially in an older or sensitive patient.

Another problem are the rheumatologists themselves. I have found they often follow a standard protocol without considering each patient as an individual. In other words, the “art” of medicine is missing.

A possible approach for anyone with autoimmune disease is the autoimmune protocol (AIP) for intestinal healing. This is not an easy fix. It focuses on healing the intestinal tract (the gut). It will not “cure” autoimmune disease but by focusing on healing the intestinal tract, removing certain foods, it can help to minimize illness.

Certainly medication is often necessary with destructive disease. Some autoimmune diseases can shorten longevity and/or are destructive in and of themselves. It is important to consider a medication carefully. Make sure you look at the medications you are taking and periodically reassess if they are all necessary.

Lastly, look at your lifestyle. That can have just as much impact on the quality of your life as well. Are you living a life that encourages good health and healing?

I have been on remicade for 2 years for ulcerative colitis (UC). I try to avoid being around people who are sick. I have had 2 colds that evolved into double ear infections and went on antibiotics each time.

If I get sick, it takes about 4 weeks to get over. Because I had breast cancer 12 years ago I still see a medical oncologist. She and I talk about the lymphoma risk. I have had UC for 30 years and feel fortunate to not have had to go on more aggressive therapy until now.

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