FOP & The Flu Season

By Frederick S. Kaplan, M.D.

Influenza is a dangerous disease even for healthy individuals, and it is even more dangerous for patients who have FOP. The Centers for Disease Control and Prevention in Atlanta estimates 20,000 deaths and 114,000 hospitalizations annually due to complications of influenza. Common complications include severe life-threatening pneumonia as well as severe muscle damage that leads to kidney failure requiring dialysis. The greatest risk of complications from flu occurs in infants, the elderly, and those who are disabled.

Patients who have FOP are particularly susceptible to complications from the flu. This is due to the severe restrictive disease of the chest wall that occurs at an early age and leads to the subsequent increased risk for developing life-threatening complications of respiratory infections. A recently completed FOP survey, currently in press at Clinical Orthopaedics & Related Research, showed convincingly that patients with FOP have an additional substantial risk of developing a flare-up from the flu. Such flare-ups affecting the chest wall would additionally imperil the already precarious respiratory status in any FOP patient with the flu.

Patients with FOP should consider receiving influenza immunizations annually. Additionally, unaffected household members of patients with FOP should consider annual immunizations to decrease the risk of spreading the flu to highly susceptible FOP patients.

It is generally recommended that patients who have FOP avoid intramuscular immunizations. One published report from 1998, which examined different routes of administration of the flu vaccine (in non-FOP patients) suggested that the flu shot can be given subcutaneously and induces similar levels of antibodies against the flu compared to the intramuscular immunization.

The decision to have a flu shot is a personal decision that must be made by every patient who has FOP (in consultation with his/her local physician). Although the trivalent flu-vaccine for the 2003-2004-influenza season did not exactly match the strain of flu that was rampant, the CDC believes the flu shot nevertheless confers some protection against more severe influenza attacks. While the flu shot can still be protective if administered late in the flu season, sometimes a shortage of the flu vaccine in the United States makes it unlikely that the vaccine will be available for all of those who want to be immunized or need to be immunized.

If the decision is made to have the flu shot, the shot should be administered with a very tiny gauge needle and administered subcutaneously. Also, an ice pack should be applied to the area of the injection and should be used intermittently for the next 12 to 24 hours in order to decrease the inflammation from the injection.

The flu vaccine should never be given to someone who is allergic to eggs (since the flu vaccine is developed and cultured in eggs). The flu vaccine should not be given to anyone who has had a previous adverse reaction to the influenza vaccine. Most importantly, the flu vaccine should never be given to an FOP patient during the time of an active flare-up.

An intranasal influenza vaccine was approved by The US Food & Drug Administration and is now available for administration, where not otherwise contraindicated, in individuals from 5 to 49 years of age. This would circumvent the need for a flu shot and might be an attractive option in some patients who have FOP. This intranasal influenza vaccine is much more expensive than the traditional flu shot, but is readily available. This method of immunization is quite new, and uses a live attenuated flu virus. There is also much less experience with the intranasal influenza vaccine in the FOP community. One young child who received the intranasal flu vaccine this year developed a severe flare-up of FOP two days after receiving the vaccine. This might have been coincidental or might have been due to the vaccine. It is impossible to say. However, several other children with FOP have received the intranasal flu vaccine without any adverse effects. Future studies might be designed to determine if the intranasal influenza vaccine and treatments such as the antiviral medications Oseltamivir or Zanamivir which are proven to be effective in reducing the severity and duration of influenza symptoms are safe and effective in patients who have FOP.

Whatever decision is made for a particular individual, it should be made with careful consideration of the FOP patient's past medical history in consultation with his or her local physician. Many patients have strong views about immunizations, and there are no easy answers here. It is important to remember, however, that influenza can be an extremely severe and life-threatening disease even to healthy individuals, and as noted above, even more so to patients who have FOP.

Thus, while there are risks of immunization, there are also substantial and life-threatening risks of influenza infection. Many patients incorrectly attribute symptoms of a cold to "influenza." They often think that they had influenza and that it was nothing more than an inconvenience. It is important to remember that influenza is a completely different beast than a bad cold, and it can be a severe life-threatening infection to anyone, especially to young children, to the elderly and to the disabled. It must be kept in mind when considering the relative risks and benefits of immunization.

The old adage about an ounce of prevention is still true. Common sense old-fashioned methods to decrease the risk of an influenza infection need to be heeded. Those include avoiding crowds, keeping well-rested, and well-hydrated and washing your hands frequently as well as avoiding touching your hands to your face, rubbing your eyes, etc.

While this brief review of treatment guidelines certainly cannot answer all questions about influenza and immunizations, I hope that it provides a useful review of the relative risks and benefits of influenza immunizations in FOP patients.