11. Myth or Fact? TNF Blocker Side Effects Are Very Dangerous

Not always. But you should educate yourself.

As with most medicines, TNF blockers have some serious side effects. However, most of the very serious side effects are also very rare. An increased frequency of infections, including tuberculosis (TB) or fungal infections, may occur. However, prior to beginning treatment with TNF blockers, a TB test is given to rule out an active infection.

Also, a very rare side effect is the increased frequency of certain cancers, for example:

  • leukemia (blood cancer)
  • lymphoma (lymphatic system cancer)
  • non-melanoma skin cancers (like basal cell and squamous cell).

Infliximab has also been linked with a severe allergic reaction (facial swelling, difficult breathing, low blood pressure).

12. Myth or Fact? TNF Blockers Are All the Same

Wrong. All TNF blockers target an inflammation-causing substance called TNF, but there are some differences, too.

  • Humira, Amjevita, Cyltezo, Enbrel, Erelzi, Cimzia, Simponi, and Hyrimoz are all given as a self-administered subcutaneous (under the skin) injection.
  • Remicade, Inflectra, and Ixifi are given by intravenous infusion and may require a clinic visit every 6 weeks for maintenance treatments.

Costs can vary, too. Be sure to check with your insurance carrier for their covered TNF blockers (those that are on their formulary), which will save you money. Ask about the use of a specialty pharmacy, if needed. If you do not have insurance, call the manufacturer to inquire about patient assistance programs.

Remember, many patients experience significant improvements in their ankylosing spondylitis using a TNF blocker, no matter which one they use.

13. Myth or Fact? TNF Blocker Injections Rarely Cause Skin Reactions

Definitely a myth. In fact, the most common side effect seen with the TNF blockers are injection site reactions on the skin.

A localized rash, burning, or itching may occur and can last up to one week. Roughly 10% to 20% of patients (10 to 20 out of 100) might experience injection site reactions, which are usually described as mild. However, if the reaction still persists after one week, contact your doctor to discuss.

In addition, patients using TNF blockers should consult with their health care provider before receiving any “live” vaccine (for example: FluMist or BCG vaccine) as TNF blockers may make the vaccine less effective.

14. Myth or Fact? TNF Blockers Can’t Help Slow Damage in AS

This is a controversial topic.

Several studies have suggested no effect of TNF blockers to slow disease progression in AS.

However, a study by Haroon and colleagues suggests that TNF blockers can reduce progression of spinal damage as seen on an X-ray by up to 50%.

  • Researchers state that treatment needs to be started early and continued long-term.
  • In the study, a benefit was seen at 4 years. Compared to patients who started treatment earlier, those who waited 10 or more years to begin TNF blockers were twice as likely to progress.
  • In this study, NSAID use did not have a significant effect on progression; but patients may still need to use NSAIDs for ‘rescue’ pain control.

15. Myth or Fact? There is No Way I Can Afford TNF Blockers

Think about this: TNF blockers are some of the most expensive drugs on the market today. These drugs can run from $3000 to $4000 per month if you are paying out-of-pocket. Biosimilars may be more affordable, but your doctor will need to write your prescription specifically for the biosimilar, as TNF blockers cannot be substituted at the pharmacy level.

However, there may be ways to help offset the cost. Each manufacturer has a patient assistance program in place, so check their websites or ask your doctor about patient assistance programs. Check Spondylitis.org for a listing of additional resources.

If you have insurance, check with your plan to determine the preferred treatments and copays for ankylosing spondylitis. The manufacturer may be able to assist you with these copay costs as well, if you qualify.

16. Myth or Fact? If TNF Blockers Don’t Work, There Aren’t Any Other Options

Wrong, a myth for sure. TNF blockers are effective for many patients with ankylosing spondylitis (AS), but there are still other options for patients who do not respond or cannot use them.

Local injections of corticosteroids, such as methylprednisolone(Solu-Medrol), can be used intermittently if there is evidence of local joint swelling. Long-term, chronic use of corticosteroids is discouraged due to serious side effects. Oral use of corticosteroids is also discouraged.

Sulfasalazine, an oral disease-modifying drug often used in rheumatoid arthritis, may be used in AS patients with symptoms in other areas besides just the spine. In general, opioid pain medications should be avoided due to side effects and concern for addiction.

Approximately 20% to 40% of patients do not respond well to standard of care biologic drugs, and there are few other options.

In 2016, the FDA approved Cosentyx (secukinumab) for AS, offering a totally new type of treatment option.

Cosentyx: Expanding Treatment Options for Ankylosing Spondylitis

Cosentyx is the brand name for the drug secukinumab and is administered by subcutaneous injection, usually every four weeks.

Secukinumab inhibits interleukin-17A (IL-17A), effectively blocking the release of chemicals by the immune system responsible for inflammation.

Fever, headache, muscle aches, sore throat, fatigue and a stuffy or runny nose are common side effects. Cosentyx also increases your risk of infection and patients treated with Cosentyx should not receive live vaccines.

Studies have shown that 61% of patients had an improvement of at least 20% in their ankylosing spondylitis symptoms after 16 weeks of Cosentyx treatment, with 36% experiencing over 40% improvement. Many of these patients had failed to respond to or were intolerant of biologics.

Cosentyx is also FDA-approved to treat psoriatic arthritis and plaque psoriasis.

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