Autoimmune conditions such as rheumatoid arthritis and psoriatic arthritis can turn moving into misery. These conditions are far worse than aching joints; in some cases, they can be crippling. For certain individuals, TNF blocking drugs such as Enbrel or Humira can be lifesavers. But it is also crucial to understand their potential complications.
Is Enbrel for You?
Q. I have psoriatic arthritis, and asked my rheumatologist about Enbrel–advertised on TV by the famous golfer who touts it specifically for psoriatic arthritis. Even though the ad includes a list of scary side effects, I asked my rheumatologist about it.
She would not prescribe it for me, because I am a breast cancer survivor. Enbrel and similar drugs are called “biologics.” According to my rheumatologist, all of them are off limits for cancer survivors. Obviously it has been determined that this class of drugs can cause cancer or cancer recurrence. Why is this stuff still on the market?
A. Rheumatoid arthritis [RA] and psoriatic arthritis can be devastating. These conditions can cripple joints and cause incredible pain. They can also affect the entire body and leave the patient totally exhausted.
A Deal with the Devil?
Over the last 60 years patients with these conditions have been left with a Faustian dilemma. The drugs that have been prescribed for RA have eased symptoms, but at a steep price. During the 1950s cortisone-type drugs were considered miracles. A patient would limp into a doctor’s office on crutches and within days could be walking without pain after taking drugs like prednisone. It took years before doctors realized that corticosteroids could cause serious and long-lasting complications.
Side Effects of Oral Corticosteroids:
- Fluid retention, edema
- Irritability, nervousness, mood swings
- Mania, depression, psychosis
- Disorientation, confusion
- Loss of potassium
- Dizziness, vertigo
- Muscle weakness
- Blood sugar elevation (diabetes)
- Irregular menstrual cycles
- Swollen face
- Hair growth (including on the face)
- Itching, rash, hives
- Increased susceptibility to infection
- Weakened bones (osteopenia, osteoporosis)
- Blood clots, venous thromboembolism
- Pulmonary embolism
- Tendon rupture
Enter the TNF Blockers:
In the 1990s the biologic medications became the next miracles for rheumatoid arthritis and psoriatic arthritis. These drugs are known as TNF blockers. TNF stands for tumor necrosis factor, a natural compound made in the body. These are drugs such as adalimumab (Humira), certolizumab (Cimzia), etanercept (Enbrel), golimumab (Simponi) and infliximab (Remicade).
These medications have a profound impact upon the immune system and are supposed to reduce or even eliminate inflammation in the joints. The result is supposed to be a slowing or a reversal of the disease process and prevention of joint deformity. Many experts see the TNF blockers as miraculous, but there can be a down side.
The FDA has issued warnings that these drugs can increase the risk of certain cancers (lymphoma and leukemia). People who never had psoriasis may develop this skin problem when they stop the medicine. Because these drugs suppress the immune system, both bacterial and fungal infections may become life threatening. One case of aseptic meningitis has been reported as a reaction to Humira (Wang et al, Journal of Investigational Allergology & Clinical Immunology, June 2017). Liver damage is another rare but very serious reaction.
Side Effects of TNF Blockers:
- Irritation at injection site
- Infections leading to coughing, pneumonia, sinusitis, bronchitis
- Digestive tract upset (diarrhea, nausea, heartburn, stomach pain)
- Skin rash (requires immediate medical attention)
- Hives, itching, sensitivity to sunlight
- Headache, fatigue
- Cancer (lymphoma, leukemia, skin or other malignancies)
- Reactivation of Hepatitis B in patients previously treated successfully for the virus
- Liver failure (jaundice and liver enzyme elevations)
- Heart failure worsening (shortness of breath, low blood pressure, dizziness, chest pain)
- Joint pain
- Visual problems, optic neuritis (requires immediate medication attention)
- Psoriasis flares
- Alopecia areata
- Neuropathy, nerve pain
Here are some comments from visitors to this website. They have had a range of experience with these drugs.
SE was alarmed:
“ENBREL ALMOST KILLED ME. Watch out for a fever and if you develop one, call your Doctor right away or get to the ER.
“ENBREL caused me to get a abdominal cyst that I was unaware of until it started spilling bacteria into my blood stream causing sepsis, which attacked my mitral valve in my heart, and I ended up having open heart surgery 3 months later.” S.E.
Lorna has had both pluses and minuses with TNF blockers:
“I have had severe RA for 30 years. I am 48 and have had it since I was 18. I was on Enbrel for 8 years and it helped with pain and stiffness for a few years and then stopped working. I have now been on Humira for almost 2 years and it is only helping a little. I have also been having numbness and tingling and blurred vision and the rheumatologist can’t seem to find out what is causing this.
“I would like to know if any one else is having any of these problems while on Humira. I would also like to know if anyone else has tried the new drugs, Simponi and Cimzia. I am considering asking my doctor to try one of these new drugs.”
Joyce developed psoriasis as a side effect:
“I was diagnosed with RA 7 years ago. After a few months, maybe a year, my rheumatologist decided I should try Humira. My husband gave me my injections faithfully every two weeks for 3 years. I did not stop or change medications but ended up with psoriasis anyway. Of all places to have it, I had a severe case on the soles of my feet.
“My doctor switched me to Enbrel twice a week to fight it. It didn’t help. I got an infection, stopped the Enbrel, and my feet eventually quit hurting and I could walk again. I could never see where the biologics helped me; they did not ease pain or fatigue. If I were ever going to go through the injections again, there will have to be a written guarantee.”
Lou has mixed treatments and gotten good results:
“As I’ve posted in several forums here before, I have psioriatic arthritis. I started on methotrexate, then Enbrel, and now Humira. Even though I’ve had severe pain on and off for years, in 2007 I had severe foot pain due to arthritis. I was scheduled for surgery.
“However, several months before the surgery I read here about grape juice and Certo. I started taking it, and several weeks before the surgery, the pain was gone. I did have surgery to straighten a toe that was badly hammer bent that was rubbing and causing pain. I’ve been relatively pain-free from arthritis since, and I believe it’s the Enbrel/Humira, but also the grape juice/Certo, as when I stopped Enbrel for the surgery, I didn’t get worse.”
TNF Blockers Do Have Benefits:
As scary as the side effects of TNF blockers may seem, these drugs can make a profound difference in the progression of several hard-to-treat conditions, including rheumatoid arthritis, juvenile idiopathic arthritis, psoriatic arthritis, ankylosing spondylitis, ulcerative colitis and plaque psoriasis. These diseases themselves cause tremendous pain, suffering and disability. When the medications work well and do not cause severe side effects they can be powerful allies, perhaps even miracles. No matter what, such drugs must be treated with great respect for their benefits as well as their harms. A recent review found infliximab to be the best first-line treatment for severe ulcerative colitis (Singh et al, Alimentary Pharmacology and Therapeutics, Dec. 4, 2017).
Share your own story below in our comments section. Have you done well on Humira, Cimzia, Enbrel, Simponi or Remicade? Have you experienced negative side effects? Let others know how you have made out.