How Many Years Can A Person Be On Rebif?

[Hawkeye]

May 21 marked the 13th anniversary of the day I had the first major attack of what turned out to be... MS.

It took about 15 months and another life-altering relapse before official diagnosis came, and I chose Rebif from the limited list of meds I was given. I have now been on it almost 12 years. That seems like a l-o-n-g time.

I am disabled with a too-long list of symptoms, but am grateful to still be on my feet and moving with the help of a cane (or two, sometimes). Things have been most unpleasant, but relatively stable, for the past five years or so. My neuro has only done a couple blood tests for liver enzymes during that time (when I asked if it was needed), but they were fine.

As I "stabbed" myself last night for what was somewhere around the 1,800th time over all these years and injected the interfeuron, I wondered...

How long can, or should, a person be on this stuff???

Has anyone here ever heard it discussed? I tried to ask my neuro about it twice, but received no real answers.

[Thinkimjob]

I have no idea. I figure I've shot up with beta or Copaxone more than 2500 times. Eighteen years of fun.
Usually your neurologist will gently say, "do you think this is still working for you?" And you'll say, "well, no, but what's the alternative?"

And then you'll get the offer of something else. Tablets are very popular these days. I said I really don't care about injecting myself after all these years, although I'd be a bit snarky if it was all for nothing.

Tysabri is the current ray of slightly shadowy hope.

And there's Lemstrada, which I'm ponying up for next month.

[dm0329]

Boy can I relate to your post!

At my yearly neuro visit, I asked if Avonex was for "life" or "when does it stop?" He said not quite for life, but suggests stopping Avonex around age 65. Or if liver enzymes or if other tx barriers emerge. . .or a better tx. . .or cure!

BTW, I was dx in my mid-twenties in 1994 (no DMD's; Betaseron lottery only). Basically, diagnose and adios! I was told that "young woman typically do very well with MS" and that I only need to see the neuro when I feel that I need to. Boy, how things have changed for the better!

Three years later, I lost vision in the lower left quadrant of both eyes thanks to a lesion on my thalamus. This overt flare sent me back to the neuro. But, the 3-year follow up MRI, showed a very aggressive disease course. Although I had "silent" progression, my MRI showed much disease activity. The neuro said I was "lucky" three times!

In 1997, I was told to start Avonex as soon as possible. Basically, I was scared silly! Around September 1997, I started the weekly pokes. Side effects were simply awful for six months, but over time the sx diminished, thankfully.

Overall, twenty years since my MS dx, more than sixteen years on Avonex, my MS has slowly progressed. I've had a flare of optic neuritis in 2003 (central vision blind spot in right eye) and left-side numbness for about a month in 2008. But, my MRI' have been stable!

Although I have tons of the old damage (you'd never know how I look so good by looking at my MRI according to my neuro. . .geesh. . .thanks doc!). But, he actually apologized to me a few years ago about how differently he'd treat me today (no longer diagnose and adios) but in early 1994 things were so different, especially for a 25 year old woman just diagnosed with few spots on her MRI.

DMD's and MS therapies have come a long way in the past twenty years. I am thankful to have maintained my tx for more than 16 years, and am thankful that most folks dx start tx immediately.

Staying on a DMD for life, or nearly so into your mid-sixties, seems like a small trade-off to fight MS disease progression.

And, 2014 Memorial Day weekend marks my diagnosis anniversary: I am thankful for MS-treatment options! Perhaps they are the silver lining in the MS cloud!

[Tawanda]

...or any DMT for that matters?