My Years On Rebif

by Sara on April 14, 2012

Rebif

Interferon Beta 1-A

I’ve written much about Gilenya, but it was not my first treatment. At the time of my diagnosis, Rebif (Interferon Beta 1-A) was really the top drug. Tysabri was the latest thing, but it had only just returned to the market after being yanked so my neurologist avoided prescribing it. In my post-diagnosis panic I felt adrift – unable to make a choice I let current trends determine my direction. If you are trying to choose a drug for MS, take a look at our guide to MS.

With 2 aunts successfully using Beta Seron, one might think that I would do well on interferon. However, my father was taken off Avonex and switched to Copaxone when his liver enzymes were too high to be safe. Rebif was a gamble, but my options were limited. The ease of pre-filled syringes and an auto-injector appealed to me over the possibility of mixing the medicine myself or using a larger needle.

My very first neurologist didn’t offer a choice in treatment. He told me it may take up to 4 months for my prescription to go arrive, but when I had a relapse 2 months after seeing him he yelled at me for not having started treatment yet (he had not yet sent in my prescription).

I soon left this doctor and found another. This new neurologist had the prescription at my door in no time at all but also required me to start an anti-depressant. He requires all patients using interferon to also take an anti-depressant to combat the common accompanying depression.

A local nurse came to our house to imbue us with her knowledge of administering the medicine. With experience I realized she was not as knowledgeable as she led us to believe. “Rolling” your thumb on the trigger was not required, there were multiple depth settings on the injector, there was a way to lock it to prevent shifting (resulting in slicing skin and tissue) during the shot. I learned this and more by trial and error. I learned that taking a hot shower before the injection helped distribute the medication more quickly, improving the burning sensation the drug caused after it was injected. I learned to use cortisone cream to help with site reactions. I learned there were more injection sites I could use to create a larger site rotation.

Everyone has a different reaction to interferon and to Rebif. Every injection site tended to look like I had been hit by a baseball for about 2 months. I was bruised all over. But many people have no issues at all with the injections. At night, I froze and frequently woke up feeling like I had the flu. Many people never experience this. My liver eventually reacted quite badly – many people tolerate the drug with no averse affects.  Injections worsened my spasticity, but some people with MS never experience spasticity at all.

I used Rebif for a couple of years and had several relapses in that time. I eventually quit the anti-depressant to eliminate the related lethargy and learned that SSRI withdrawal is very difficult to experience. In retrospect, I believe that neither medication helped me at all, but the truth is that I will never truly know what life would have been like without it.

Approved in Europe in 1998 and in the US in 2002, Rebif is said to reduce relapses by 18% – 36%. It is said to strengthen the blood-brain barrier which may contribute to its affect on Multiple Sclerosis. The drug is administered via subcutaneous injection three times per week.

Side effects of Rebif are:

  • injection site disorders
  • flu-like symptoms
  • poor results on liver function tests
  • blood cell abnormalities
  • depression
  • seizures
  • liver problems

Ultimately the decision to leave Rebif was due to the damage it caused my liver. I was very happy to trash all the needles, but if Rebif had worked for me I would have lived with the painful injections indefinitely. Ultimately I would have chosen painful treatments over disability, but I was not fortunate enough to have that as a choice.  For some of us with Multiple Sclerosis, this is absolutely the right drug. And for some of us, it is best left behind.

 

Did Rebif work for you? Did Rebif cause any serious problems for you? What has made you change your mind about MS treatment options?

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{ 2 comments… read them below or add one }

Yvonne Olivier September 12, 2016 at 11:56 AM

Thank you so much for sharing this with us, Sara. I have yet to start with Rebif, but am deadly scared of the side-effects. I do not suffer of MS only but have a chronic pain syndrome called ‘Complex. Regional pain Syndrome’ which is incurable but the pain is there every minute of the day and night; had spinal surgery a year ago to try and help reduce chronic back pain (which it didn’t) and have bladder problems due to high dosage of internal radiation treatment for cancer earlier in life. I Googled and read about all the side-effects, and when I read your personal experience with Rebif, I am seriously thinking of not even getting started! Thank you for being so honest. I wish you all the best for the future! Yvonne – South Africa

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Sara September 12, 2016 at 2:02 PM

Yvonne, I am so sorry to hear of your condition. It’s new to me, and I am curious as to how Rebif would treat this at all? I certainly don’t want to discourage you from seeking treatment though – I have heard of individuals who tolerated this medication very well and had virtually no side effects. You’ve taken a great first step in researching the effects, though. If you do decide to take it, remember that you can always stop. As a patient, no one can advocate for you the way you can advocate for yourself. I wish you all the best in finding a treatment that works for you.

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