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Excellent Rebif experience

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    Excellent Rebif experience

    I am posting this for a specific reason - I was diagnosed in March 2013 and, like most people, quickly turned to the internet to learn more about MS and treatments. Most of the information out there on MS treatment is frightening to the point of paralyzing. Reading message boards convinced me that any experience with a DMD was going to be a terrible one. So I thought I'd add my experience with Rebif after a few months of use...

    I started Rebif in early June after being rejected for Tecfidera by my insurance company. I had originally picked Tec because it was new and didn't have as much negative chatter about it posted as the interferons. I was quite upset about the rejection and scared to start Rebif, but assumed I did not have much of a choice if I wanted to use DMDs.

    After my doctor submitted the prescription for Rebif, it took MS Lifelines *one hour* to call me and confirm the order. I spoke to a very kind nurse who explained the process of getting and using the medicine to me. The nurse sent my order to the specialty pharmacy that my insurance uses and it took the pharmacy all of a few hours to call me to confirm delivery of Rebif. I had my medicine within 24 hours of the original order.

    MS Lifelines set up a home visit with a nurse to teach me how to use Rebif, and she was just wonderful. I use the Rebidose injectors, and she made sure that I was competent with their use and watch me inject for the first time. The injection itself was painless. I felt so much better about the process after that first time.

    I had braced myself for a summer of nasty side effects and flu-like symptoms, but I've experienced none of that. I premedicate with two OTC Advil and that's basically it. Titrating up yielded very minimal side effects, mostly just a night of insomnia or two as I adjusted. I've never experienced another side effect.

    The injections have remained, for the most part, painless. My thigh injections sometimes sting for a portion of the injection (10 second injection, a sting for maybe 2 - 3 seconds). I've only had a few site reactions and they consist of a red mark around the injection site the next day. They do not itch or hurt or swell. And I only get those marks on occasion.

    Rebif offers a lot of MS-related support, including the ability to talk to other MS patients about their experiences. I have yet to take advantage of those opportunities, but must comment that everyone I've ever spoken to from MS Lifelines has been knowledgeable and so kind. It's been a great experience overall. The medicine arrives at my door each month like clockwork, I have no copay (I think no one with private insurance does), and I know that if I had any problems, they would be fixed quickly and professionally.

    I saw my neuro for the first time since starting the medicine last week, and he's as pleased as can be with my current state and experience with the medicine. He told me that I was doing "just wonderfully" on the drug. My bloodwork looks great and my clonus response (which got me sent to a neuro in the first place) is gone. I was diagnosed with very minimal MS symptoms, and really don't have any now (occasional pseudo exacerbation issues when exercising heavily outside - just a little tingling that goes away). I am a female in my early 30s in good health overall.

    I plan on taking Rebif for as long as I can. For some reason, the drug and I seem super compatible. I can't confirm that Rebif is halting my progression until my winter MRI (I'll check in again), but taking it has been a breeze.

    I'm not affiliated with the drug company at all, like I said, I just want to affirm that it's possible to have an excellent experience with a DMD, even an interferon. I hope that every MS patient who takes DMDs finds a drug that is as compatible with them as Rebif is with me. Overall, please don't let all of the negative information scare you from trying DMD treatment.

    #2
    I am so happy for you to find the right drug so quickly. I hope you continue to co-exist well with Rebif.
    Karen

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      #3
      Some people do really well on interferons, and I am glad you are one of them.

      Comment


        #4
        I wanna share my great experience on Rebif as well. I was also DXed in March of 2013! I chose Rebif after spending my week in the hospital researching all the drugs, and my neurologist agreed.

        I use the Rebidose autoinjectors and am on the 44mcg dose. My only side effects have been site reactions. I only seem to get them on my stomach, and they go away in a few days. They don't itch or hurt. The shots did not sting until I got up to the full 44mcg dose, but I have found that a warm compress before and after injecting helps. (Rebif is acidic so stinging is normal.)

        Some tips?

        -Take 2 ibuprofen or Tylenol with the shot to help ward off any flu like symptoms you may have.
        -If the click of the autoinjector startles you, like it did me, do a thing I thought of: wear some headphones with music to dull the noise. Slowly decrease the music volume each time until the click no longer bugs you.
        -Get someone to help you with the butt shots, if possible.

        All in all, I am glad I chose Rebif. My blood work has been good, and my side effects have been almost nonexistent. I sure hope I can stay on Rebif for a long time.
        Diagnosed with RRMS on 3/15/2013...beware the ides of March!
        Rebif from 5/2013 - 09/2014.
        Gilenya since 11/2014.
        Also taking vitamin D3, fish oil, magnesium, and B12.
        EDSS 3.

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          #5
          I'm getting ready to start a DMD and have been checking into Rebif. Thanks for the details of your experiences.

          --Greg
          RRMS since July 2010.

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            #6
            Rebidose autoinjector?

            Aredmosquito - I still use a "rebiject". No one at MS lifelines has said anything about this other injector. Could you please tell me about it and if it is similar to the rebiject.

            Thanks!

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              #7
              It kind of is, but with no assembly at all. It is a preassembled and single use autoinjector. SUPER easy to use! You just take it out of the package, take the cap off and inject. Then the whole thing goes in the sharps bin. The click noise is also not as loud as the Rebiject.
              Diagnosed with RRMS on 3/15/2013...beware the ides of March!
              Rebif from 5/2013 - 09/2014.
              Gilenya since 11/2014.
              Also taking vitamin D3, fish oil, magnesium, and B12.
              EDSS 3.

              Comment

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