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.