Gilenya and malignancy?

[dermis]

hello all,

been on rebif for 10+ years. doing well, but running out of injection sites and ready to make a change.

neuro is recommending gilenya. i am concerned about theoretical risk of malignancy with long term use (maybe drug has not been around long enough for this possibility to show up).

any thoughts?

[powellm]

Had the requisite dermatological exam prior to my taking Gilenya in the spring of 2012. Took it for a few months - was taken off due to heart rate and blood pressure issues. Today I was diagnosed with malignant Melanoma.

[Kimba22]

So sorry to hear of your diagnosis, powellm. Wishing you a complete recovery.

i am concerned about theoretical risk of malignancy with long term use (maybe drug has not been around long enough for this possibility to show up).

any thoughts?

Unfortunately, there's no real numbers published yet. More is known the longer a drug is in use. Gilenya has only been FDA approved just shy of 3 years.

But, there is a distinct possibility of an increased risk because Gilenya is an immunosuppressant. I haven't experienced this, but was pulled off the drug after 9 months when leukopenia resulted in a very serious infection.

It all depends on your willingness to accept possible risks that may be associated with the drug. As the effectiveness with these drugs rises, so it seems do the risks. There are risks with all drugs, both known & unknown. My MIL won't take ibuprofen because of an increased risk of a heart attack. I had an unknown, rare reaction to Rebif that developed after 2 1/2 years and had to go off it, permanently.

Tecfidera seems to have a lower risk profile. It has only been FDA approved a few months, so who knows what may eventually show up with it. The side effects some people experience, especially initially, do sound pretty miserable to me. That being said, I felt great while taking Gilenya. But, I sure didn't feel great for a long time after my serious infection.

The drs. and literature can only guide us, but we must be willing to accept the risks and possible outcomes. You may do fantastic on the drug, but, then again, you could have a serious side effect. Kudos to you for wanting to make an informed decision. It's not an easy one to make. Speak to your neurologist about your concerns.

Good luck!