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    Starting Rebif in a few weeks...

    Newly diagnosed and starting Rebif in a few weeks! I'm wondering if anyone has been on Rebif for any long period of time? It seems like most people are on it for a couple years (as I lurk on every message board known to man) and then they have to switch. Has anyone been on it for 5, 10, 15 years with good results? I'm totally in fight mode but a little concerned that I won't have many other avenues if this doesn't work or if it only works for a short term. Thanks!
    "It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate,
    I am the captain of my soul." ˜William Ernest Henley

    #2
    Hi There!

    I've been on Rebif for 6 months. When I titrated to 44mcgs. I got soooooooooooooo sick. Got off of it for a month and back on 22mcg. I hydrate alot the day of and the Dr. has me taking 500mgs. of Naproxen 1/2 hour before I give myself the shot. I suggest you take something like aleve, tylenol etc...none of those worked for me and I had bad flu symptoms. Doing great now. Wish I could take higher dose and still may in time. I'm doing the auto-injector Rebidose. Simple .....easy. Best of luck and let me know how you do.

    My best.........
    Diamond


    Diagnosed 6-28-14
    RRMS
    Alone we can do so little; together we can do so much. ~Helen Keller~

    Comment


      #3
      I was on Rebif for 12 years and it worked great for me. Every single MRI after that showed no new lesions and I had no relapses in that period. I wish that I could still be on it, but I developed hard knots in my skin after taking shots for 18 years. Prior to being on Rebif, I had been on Avonex and I had brain atrophy, new lesions and a major relapse. Prior to Avonex, I was on Betaseron and had no relapses, but I had low WBC. After stopping Rebif, I was on no therapy for 6 months, but have now been on Tecfidera for 3 months and I don't like it as well as the Rebif. Some people don't like shots, and they are not fun, but it was worth it to delay progression.

      Comment


        #4
        Diamond57,
        I also was on 22mcg for a long time (probably 3 years) and had actually forgotten until I read your post. In hindsight, it was just as effective for me as the 44 mcg that I took the next 9 years. After 3 years on the 22mcg, I had no problem transitioning to the 44mcg, but I still had to take 2 extra strength Tylenol (or generic) with every shot and then another dose 4 to 5 hours later. If I missed the Tylenol, I had headaches and body aches.

        The trick for me was taking the shot around 4 to 5 pm, so that I could take my second dose of Tylenol before bedtime. Once I figured that out, it never interfered with my sleep.

        Comment


          #5
          Thanks ya'll!

          I appreciate the replies, Waysiek and Diamond. It feels like my life has turned upside down. Most of the time I strangely want to crack up laughing (this is not funny) or sink down and become part of the floor or go work out. I guess the roller coaster will be this way until I come to terms with it. I keep asking my neuro if he's SURE I have this. I feel great and take no medications! Oh well...

          So my Rebif materials just came in the mail but the meds are coming later. I have scars on my tummy from old laparoscopic surgeries so I hope there are enough places to inject. I'm taking your advice and taking a tylenol right before the shot and a few hours after. Will keep you updated on how it goes.

          Thanks again!
          "It matters not how strait the gate,
          How charged with punishments the scroll,
          I am the master of my fate,
          I am the captain of my soul." ˜William Ernest Henley

          Comment


            #6
            Hi. I was on rebif for 13 years. I decided to switch to tecfidera when it came out because I had developed the hard knots (fibrous areas) under my skin also. I imagine that could/would happen on any sub-q shot after years of doing them tho.

            Other than that I liked it.
            MS dx's 2000
            Tysabrian

            ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

            Comment


              #7
              Originally posted by allHailye2 View Post
              Hi. I was on rebif for 13 years. I decided to switch to tecfidera when it came out because I had developed the hard knots (fibrous areas) under my skin also. I imagine that could/would happen on any sub-q shot after years of doing them tho.

              Other than that I liked it.
              Thanks Allhailye! Did the fibrous areas go away after you stopped rebif?
              "It matters not how strait the gate,
              How charged with punishments the scroll,
              I am the master of my fate,
              I am the captain of my soul." ˜William Ernest Henley

              Comment


                #8
                my knots went away except for one which I can only find if I try. it is not visible at all. I never developed the indentations that I read about for people who were on Copaxone.

                Comment


                  #9
                  Checking In!

                  How's it going on the Rebif???? I sure hope well.

                  Diamond


                  Diagnosed 6-28-14
                  RRMS
                  Alone we can do so little; together we can do so much. ~Helen Keller~

                  Comment


                    #10
                    Originally posted by DPL2014 View Post
                    Thanks Allhailye! Did the fibrous areas go away after you stopped rebif?
                    I don't think so. Maybe some? Like waysiek said, they aren't visible & u have to feel around to find em...which I don't do anymore because I'm not doing shots now. Haha
                    MS dx's 2000
                    Tysabrian

                    ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

                    Comment


                      #11
                      I wish I could have stayed on the Rebif because the medicine worked so well for me. I kept doing injections even after my doctor advised me to stop . But my skin just couldn't handle any more shots with all of the hard knots and inflammation. I sometimes wonder if I might be able to try them again in the future now that I seem to have healed most of the hard areas.

                      I tried nothing for 6 months because I didn't like the side effect profiles for the oral meds, but I finally gave Tecfidera a try and have been on it for 4 months. I'm not sure if I will be able to stay on it.

                      AllHailye, I believe that I read that Tecfidera messed with your blood counts and that you had to quit. What are you taking now or planning to take?

                      Comment


                        #12
                        Thanks!

                        Originally posted by waysiek View Post
                        I wish I could have stayed on the Rebif because the medicine worked so well for me. I kept doing injections even after my doctor advised me to stop . But my skin just couldn't handle any more shots with all of the hard knots and inflammation. I sometimes wonder if I might be able to try them again in the future now that I seem to have healed most of the hard areas.

                        I tried nothing for 6 months because I didn't like the side effect profiles for the oral meds, but I finally gave Tecfidera a try and have been on it for 4 months. I'm not sure if I will be able to stay on it.

                        AllHailye, I believe that I read that Tecfidera messed with your blood counts and that you had to quit. What are you taking now or planning to take?
                        First off, thanks to all of you for responding. I'm so glad I found this board. It's such a lonely journey... I get the Rebif on Thursday but the nurse hasnt called for the home visit yet,so we'll see. This is all becoming more real since the Sharps disposal container arrived. I just sat at the kitchen table and stared at it for a long time.

                        I was so excited the first time I read that there were oral drugs! Then I read the side effects. Are they serious right now?! Half the time I think the depression side effect comes from the fear/anxiety over the other side effects. I already decided that if this doesn't work I'll go to Copaxone with its possibility of "15 minutes of crushing chest pain". Oy.
                        "It matters not how strait the gate,
                        How charged with punishments the scroll,
                        I am the master of my fate,
                        I am the captain of my soul." ˜William Ernest Henley

                        Comment


                          #13
                          O.M.G.!!!! DPL2014 you sound just like I did 6 months ago. I will be looking forward to the post. Sorry my posts are repitious. For the first time I had some pain in my right thigh. Not sure if I hit a muscle. Anyone do that????? Being thin they will not allow me to give injections in arms. We're all learning and in this together. HIP-HIP-Hooray!!

                          Take care.


                          Diagnosed 6-28-14
                          RRMS
                          Alone we can do so little; together we can do so much. ~Helen Keller~

                          Comment


                            #14
                            Going on 12 years with Rebif

                            Hi there, I was diagnosed in late 2003 and began Rebif shots early in 2004. I was pretty consistent until 2013, when I stopped for no particular reason for almost a year. My MS neuro pushed me to resume, and now I'm very consistent. I have mild flu symptoms starting about an hour after I finish the shot, but if I inject (which doesn't hurt) and then take 2 ibuprofen and go up and dress for bed, I'm asleep within an hour, and I sleep particularly soundly for eight hours or so (minus a trip to the bathroom in the middle of the night.) I've never had injection site issues such as others mentioned, but I'm thin and haven't enough extra flesh for arm or thigh injections, so they are all left/right ab, then left/right bum. I tried Tecfidera, but had serious stomach cramps etc., so went back to Rebif. I certainly have MS symptoms and weakness, but the medication has not been a problem. I hope it works as easily for you!!
                            p.s. I was diagnosed late, age 57, and am now 70+.

                            Comment


                              #15
                              Aissunnen.... I was diagnosed not even a ago at 57 also. You've given all of us newbies hope!


                              Diagnosed 6-28-14
                              RRMS
                              Alone we can do so little; together we can do so much. ~Helen Keller~

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