finally using rebif again!

08Apr14

At long last… after a full month of non-use… I’m finally back on Rebif!

My insurance had changed pharmacy delivery providers (as this medication gets shipped to me on ice), and I got 1 day’s notice of this change before I ran out of the previous month’s supply. How much time I spent on the phone with the new pharmacy to try to get things straight with them. And each time I called, I’d find a new error in my record, whether it be a typo in my name, mistyped address… (yes, I believe my insurance went with a cheaper provider)

Several calls with the pharmacy had ended with “your insurance is denying the drug. We’ll call and look into that.” and I’d call the following week and find out that no one had followed up. (Why an insurance company would deny as mainstream an MS drug as Rebif…)

Then they screwed up my copay, and my copay assistance, and… everything they could screw up, they screwed up. Bottom line, a few days ago, I got the drug. And yes, all of the nurses agreed that I should start with a half dose for a few weeks, since I no longer have the drug in my body. (in case of side effects)

Good news is… no injection site reaction so far, no side effects! I think I’ll stick with the half dose for the first two weeks before I graduate back up.

And the most amazing thing is that during the time I wasn’t using the drug, that I had no MS symptoms, especially given the stress my body went through with two abdominal surgeries in the same week. I’d say that’s a testament to good nutrition, exercise, and healthy habits in the fight against MS, wouldn’t you?

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10 Responses to “finally using rebif again!”

  1. Not using any injectable at all; used Rebif for nearly 13 years! –have been using the capsule,Techfidera all of this year, and I don’t miss injections at all. Started out on Avonex –right after being diagnosed with MS in 1996. My thighs,are ruined from all those injections; good luck to,you on Rebif,again!

    Glad that your symptoms haven’t increased, and that your time of no-medication was as in eventful,as it was! You’re very fortunate. I had plenty of,injection site reactions. I still look forward to cure; take these Techfidera capsules twice a day, everyday –much easier to travel with the capsules than with needles and syringes; I’m so small that the Rebif had to be transferred to a smaller syringe so that I could use a smaller needle. Had to seek hotels with refrigerators and had to pack this apparatus carefully. I don’t miss it at all, but since this is working for you, I’m happy for you! Good luck, and continued success!

    • Yeah, I started on Rebif before pills were an option. Then the pill came along, and my specialist asked if I wanted to try. I didn’t want to mess with something that I figured was working, right? But now… I’m not sure! I agree that the syringes make traveling difficult (I really got interrogated by the French government in December!!!) and would love more convenience. Who knows…

      • I would never trade the Techfidera capsules for anything… All those needle pokes for so many years have ruined my pin cushion thighs. So far Tecfidera is working, but tomorrow, I’m supposed to start dating again (I’m 60 years old and gave been taking MS drugs since 1996 –afraid to allow this gentleman to ever see my thighs (I hate to look at them also, just got divorced as of September of 2013 after being in a marriage that began in 1973; met my ex-spouse right after a third trimester abortion I has when I was 16 following a rape that impregnated me when I was 15; my ex was a statutory rapist who dominated and controlled me for so many years (I was married for 40 years); I’d be fine were it not for the optic neuritis that complicates driving –right when I have my first date as an adult single woman)).

      • (sorry it took me so long to reply!) I like traveling, too, which makes it tempting to try an oral. Syringes are tough to deal with, taking on planes. The longest time away I’ve had to deal with since I’ve started Rebif is 3 weeks. But I got harassed by some French border agents last December with the syringes, even though I tried speaking French with them! They didn’t believe I needed a medication because I don’t look sick. 😐
        Anyway, hope the date went well!

      • Understand completely!! Of course you don’t look sick!

        Went on a date tonight, second with the social worker; came back to my house so that I could get my Techfidera capsule!! –then Jim hit a deer (I live on a winding country road, and don’t like driving because of the optic neuritis –Jim understands this and was such a gentleman! –using online dating services mean that men respond to me strictly by how I look, and like you, I don’t look sick.

        Perhaps it is time to consider Techfidera; I didn’t have to come back for it, but hitting the deer made Jim and I closer.

        Thanks so much for remembering the date!

  2. Oh, and while on Rebif, I developed “optic neuritis” in my,left eye, so I’m legally blind there! –have you ever had “optic neuritis”? If you haven’t, I hope that you never do. Central vision is gone, and so is color! –I can see nothing clearly (I’m 60 years old) –have had myopia since I was 14 –everything became blurry and feathery in geometry class, so I guess I’m used to a certain lack of clarity. I’ve never been overweight, quite the opposite (at only 90 pounds now). I was teaching a class (I’m a professor ) when the optic neuritis began about three years ago. Neuro-opthamologist say the loss of,vision can be considered permanent. There are far worse things than what I face. MS is not the worse possible outcome! –I consider myself extremely lucky that there are any treatments at all! Before,1996, there weren’t treatments such as Avonex, Rebif, and Techfidera, so,even if my MS has been diagnosed when I experienced my first exacerbation while I was a grad student in New Hampshire (just a couple,of days), there were no,treatments, no effective treatments. Then that disappeared, being attributed to test anxiety… And the following year, I had the sensation that my thighs were enormous loaves of bread! (I created a post about that here: When I was bread URL:
    http://forkergirl.typepad.com/a_limited_forker_girls_ti/2007/10/index.html –please enjoy, if you look.

    • Never the optic neuritis, far as I know, but I’m also very nearsighted! When I’m tired, I find I easily become cross-eyed…

      • Do you mind how the world looks via extreme myopia?

        How nice that you haven’t experienced optic neuritis! Other than that (well, including that, because my eyes look “normal”, but what the left eye sees is changed; problem is the optic nerve; structurally, the eye should be able to see –even if covered –those shadows that ring a muted and grayed (at least “50 Shades of Gray) are visible! Can’t turn off what this eye perceives unless the optic nerve is removed…

      • Link to a poem I wrote (published in one of my ten books –.None of them lucrative ventures): “Magnificent Myopia”:
        link to “Magnificent Culture of Myopia”:
        http://www-personal.umich.edu/~thyliasm/MossMagnificentMyopia.pdf

  3. Your insurance issues sound familiar. If need again, contact MS LifeLines Insurance line. They will reach out to your carrier for you. They even offer copay assistance for one year, no questions or forms to complete. I was pleasantly surprised and apprecitive! 🙂


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