Hope...not so quick!

A patient who was previously being treated with Tysabri (Natilizumab) for their MS, and then switched to Gilenya (fingolimod) (The pill!) has contracted PML.


I am now on Tysabri, and was hoping I could switch to gilenya as I fricken hate needles with a passion (but have become a lot more used to them being stucky* every 28 days for the last 2.5 years, thanks to the fantastic AIC crew @ NCH!), but switching medications seems to be a PML trigger, and since I'm seeing such great results on tysabri (haven't had a relapse since treatment started) and the pill will be ~ as much $ as tysabri, I don't see myself switching medications. Plus I get to pick out my own lunch when I'm being infused nowadays!

Here is the first paragraph warning from NIH on Tysabri (emphasis mine):

"Receiving natalizumab injection alone or with other medications that affect the immune system may increase the risk that you will develop progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability). The more doses of natalizumab injection you receive, the greater the risk that you will develop PML."

This contradicts what my neurologist said, so I'll have to bring that up with him...damned if you do...damned way more if you don't. Here is to hoping my immune system is so amped up that an immunomodulator won't open up the door for PML! So I suppose hope will have to continue to carry me.

Oh, and if you're unlucky enough to be diagnosed with MS, and lucky enough to be insured and treated with medications that delay progression, and then unlucky enough to contract PML, but lucky enough to catch it before your life ends, you also have to watch out for IRIS:

"If your treatment with natalizumab injection is stopped because you have PML, you may develop another condition called immune reconstitution inflammatory syndrome (IRIS; swelling and worsening of symptoms that may occur as the immune system begins to work again after certain medications that affect it are started or stopped), especially if you receive a treatment to remove natalizumab from your blood more quickly. Your doctor will watch you carefully for signs of IRIS and will treat these symptoms if they occur." Also from the above linked NIH page.


What is PML you ask, aside from answering RTFA, the wikipedia page says, "PML is similar to another demyelinating disease, multiple sclerosis, but progresses much more quickly."

1 comment:

  1. It was a sad day for me either when I read that news, however it is not clear if the PML was triggered by Gilenya or it was because of Tysabri. Biogen has a chart for Tysabri related PML risk. The highest risk factor comes at about 10.6/1000 with the combination of previous immunosupressant drug use, on natalizumab for over two years and positive for JCV antibodies. I was looking in the article if any of the above would be mentioned about the patients but it wasn't.
    I can't imagine how horrible it is to always worry about that "lurking" risk of pml that you mentioned. Try not to worry about it more then you should, the numbers(statistics) aren't that bad, but at the same time be vigilant about progressive multifocal leukoencephalopathy pml symptoms and contact your doctor the first time you feel there is something different.

    I wish you well.



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