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Show Me The Insert – PNH Medications Edition

By / / Alexis Lorenze, black box warning, boxed warning, complement inhibitors, eculizumab, iptacocan, meningococcal disease, meningococcal vaccines, package inserts, paroxysmal nocturnal homoglobinuria, PNH

While vaccines are often recommended for many high risk conditions, did you know that they are actually REQUIRED before treating some others? Take paroxysmal nocturnal hemoglobinuria or PNH for example.

“Paroxysmal nocturnal hemoglobinuria (PNH) is a rare disorder in which red blood cells break apart prematurely. It is an acquired hematopoietic stem cell disorder.”

Paroxysmal nocturnal hemoglobinuria

Now whey would someone with a rare blood disorder need their vaccines?

Show Me The Insert – PNH Medications Edition

Well, one big reason that patients with PNH need their vaccines is because the life-saving treatments for PNH can increase their risk to get sick with a few vaccine preventable diseases!

“We report the largest experience of managing meningococcal risk in patients on complement inhibitor therapy for PNH. Despite our proactive management we had 9 cases of meningococcal sepsis, with one fatal infection.”

Management of Meningococcal Disease Risk in Patients with Paroxysmal Nocturnal Hemoglobinuria (PNH) on Complement Inhibitors: 18 Years’ Experience from the UK National PNH Service in Leeds

And that’s why it is not only recommended, but required that patients get vaccinated before they start taking certain medications, like eculizumab (Soliris) and iptacocan (Fabhalta).

There is a black box warning about it in the package insert for these types of medications.

The Boxed Warning for PNH medications requires that patients are first vaccinated.
The Boxed Warning for PNH medications requires that patients are first vaccinated.

In fact, for iptacocan, you have to get at least three vaccines!

The Boxed Warning for eculizumab includes a requirement for meningococcal vaccines.
The Boxed Warning for eculizumab includes a requirement for meningococcal vaccines.

Eculizumab only requires the meningococcal vaccines.

“Compared to otherwise healthy people, someone receiving a complement inhibitor is up to 2,000 times more likely to get meningococcal disease.”

Meningococcal Disease and People Receiving Complement Inhibitors

Meningococcal vaccines that can protect people against meningococcal subtypes ACWY (Menactra, Menveo) and MenB (Bexsero, Trumenba).

Can you get treated for PNH without getting vaccinated?

Anti-vaccine influencers have laundered the story of a women with uncontrolled PNH, Alexis Lorenze, who was vaccinated as she started eculizumab.
Anti-vaccine influencers have laundered the story of a women with uncontrolled PNH, Alexis Lorenze, who was vaccinated as she started eculizumab.

Not if you want to get treated with the latest life-saving medications.

Check the inserts!

“Patients with PNH should receive vaccinations against certain types of bacteria to prevent infection. Ask your doctor which ones are right for you.”

Special Issues for People with PNH

And since infections can cause flares of PNH, it is typically recommended that these patients stay up to date on their other vaccines too.

More on Vaccines for PNH

Last Updated on September 23, 2024