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Monday, July 16, 2012

Anakinra (Kineret): A promising new FMF treatment

Hope for people with familial Mediterranean fever (FMF) in the "House of Grace"

By Rita Pehlivanian

As a child, I would have frequent bouts of FMF attacks – five or more per year. After being diagnosed with FMF at age 8, I was put on colchicine (three 0.6 mg pills per day), that eventually reduced my attacks to about two per year. And after starting oral contraceptives at age 18 for ovarian cyst prevention, I was able to reduce my colchicine to two pills daily, and I stopped having attacks for almost five years!

Unfortunately, my FMF attacks came back again, at the previous stable rate of about two per year for many years. That changed beginning around September 2010, not long after I lost a dear friend of mine to lung cancer and having moved into my first house with my husband. For a stretch of seven months, I started having about two attacks each month. They were severe enough that I needed to be hospitalized for most of them. As usual, they only treated the attack symptoms: dilaudid for pain, Tylenol for fever, gravol for nausea and vomiting, prednisone and colchicine for inflammation, and saline for dehydration.

I lost 15 lbs., I started losing hair from the prednisone, and I looked like death. I also felt like dying. I had to quit my job, and ultimately, we had to sell our house to reduce the financial and mental burden.

I had given up all hope during what would prove to be my last hospitalization. My wonderful husband, a former journalist who is now a medical writer, used his research skills to find the latest medical research on FMF. Most of the doctors we’re used to dealing with don’t even know what FMF is, and the ones who do would tell us that there is no new treatment; stick with colchicine and take prednisone as needed, or else, pain meds in the hospital ER.

It turns out, there are new treatments. Or at least, there are doctors investigating new treatments in the US, Israel and elsewhere. While I was in the hospital one night, my husband found a doctor who, referred him to another doctor, whose colleague was running a study through the National Institutes of Health, in Bethesda, Maryland, looking into PREVENTING FMF ATTACKS with something called anakinra (Kineret), an interleukin inhibitor. Basically, a natural protein that stops inflammation, so an FMF attack is stopped in its tracks!

(FYI: Bethesda means "house of grace" in Hebrew, and is the site of an ancient healing pool in Israel.)

Not only did we learn this amazing news, but it turns out, the study is open to people like me with FMF that isn’t controlled by colchicine. Within a few weeks, after having done a genetic test to confirm that I had two FMF mutations, and submitting the appropriate forms to Anne Jones at the NIH’s rheumatology clinic, we had an appointment to meet Dr. Dan Kastner, a world authority on FMF who actually discovered the FMF gene, as well as his team of top rheumatologists.

(NOTE: it can take weeks to get all the preliminary tests done and months to get an appointment. Times may vary.)

And if that wasn’t amazing enough, as a study participant, all the care, including any medications I might receive, would be totally FREE of charge! And it doesn’t matter that I’m not American – they have patients from all over the world.

Unlike all other doctors I had dealt with in the past, these ones knew exactly what I was experiencing, and were not only reassuring, but compassionate and understanding. They have several hundred patients like me, so they know what they’re talking about.

For the first time in my life, I felt HOPEFUL about my illness. Deep down, I still had doubts about the medication – at first, they tried putting my on the American formulation of colchicine, but I had an even harder time tolerating it than the Canadian one.

We had to go back almost five months later, and this time they gave me the injectable drug, anakinra. It would have been nice if I never had another attack, and didn’t ever have to stick myself with a needle, but inevitably, an attack did occur.

A few weeks ago, I started feeling the onset of an FMF attack. My husband took the anakinra out of the fridge, left it out for an hour to warm to room temperature, prepared the injection site on my thigh, and I literally took the plunge. The needle didn’t hurt, but the injection burned as it was slowly injected subcutaneously.

The discomfort was a small price to pay, because an attack no longer felt imminent. About 24 hours later, all pain was fully gone and the lingering symptoms slowly went away. I had no side effects, not even pain or redness at the injection site.

If you think you may be a candidate for the NIH study, visit Dr. Kastner’s FMF study page or contact the head research nurse, Anne Jones, at 301-443-5422 or ajones@mail.nih.gov.

All the best!

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