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What to expect

Primary HLH is different for everyone. Some people may try quite a few treatment options with their doctor to get symptoms under control. This is often done to prepare for a bone marrow transplant.

Most people who have primary HLH will need a transplant to be cured. Getting symptoms under control will be important if your doctor decides transplant is best for you or your loved one.

Goals of primary HLH treatment

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CONTROL SYMPTOMS

The symptoms of primary HLH are usually very serious. Your doctor will begin treatment as soon as possible to relieve them.

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 PREPARE FOR TRANSPLANT

Getting symptoms under control will be important if the doctor decides a transplant is best for you or your loved one.

How doctors start treating primary HLH

There are 2 main treatments that doctors use to begin treating primary HLH

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1A steroid called dexamethasone

A drug that helps relieve swelling and inflammation

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2A chemotherapy called etoposide

A treatment, often used for cancer, that stops cell growth

Optional An immunosuppressant called cyclosporine

Sometimes, doctors may use cyclosporine in addition to dexamethasone and chemotherapy. It is a treatment that makes it easier for the body to accept a transplant. Cyclosporine prevents the immune system from responding to new cells or tissues in a harmful way.

Primary HLH is different for everyone. Keep in mind that your doctor may prescribe some or all of these treatments. Depending on how they work, your doctor may change the treatment plan or consider other options.

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Learn about primary HLH treatment options
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What if treatment isn’t working?

There is another medicine the doctor may try. Gamifant is the first and only FDA-approved treatment for people with primary HLH who:

  • Do not improve with other treatments
  • Have very bad side effects with other treatments
  • Respond to other treatments at first, but then symptoms come back
  • Have symptoms that quickly get worse
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Talk to your doctor to find out if Gamifant is right for you or your loved one, and learn more about Gamifant here.

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Two of the most important things that can help make a transplant successful are:

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Managing signs and symptoms

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Finding a donor whose blood or bone marrow is a genetic match for you or your loved one

It may take some time to find a donor who is a good genetic match. It’s important to work with your doctors to manage symptoms if you’re waiting for a donor.

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If you or your loved one has been diagnosed with primary HLH, see how Gamifant could help