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.
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
Control symptoms
The symptoms of primary HLH are usually very serious and can lead to severe organ damage. Your doctor will begin treatment as soon as possible to relieve them.
Monitor for potential side effects
In your treatment journey, you may hear the term "immunosuppressive therapy," which is a standard type of treatment in primary HLH. These are powerful medicines that are used to help reduce the inflammation in primary HLH, which broadly impact the entire immune system.
Prepare for transplant
Getting symptoms under control will be important if the doctor decides a transplant is best for you or your loved one.
Always talk to your doctor about your or your loved one's symptoms and response to treatment. This way, you can make informed treatment decisions together.
How doctors start treating primary HLH
The first treatments that doctors often use to begin treating primary HLH are:
1
A steroid called dexamethasone | A drug that helps relieve swelling and inflammation
2
A chemotherapy called etoposide | A treatment 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.
