Announcement

Collapse
No announcement yet.

Switched to Rebif - hating it

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Switched to Rebif - hating it

    I started out on Copaxone. I had welts and some itchiness from it but nothing traumatic. Unfortunately it wasn't working. My doctor switched me to Rebif and I have been doing the gradual does increases.

    These shots really hurt. The medicine burns so much more than Copaxone ever did. I am literally crying and trying to talk myself through these shots each time. It is harder to do this every time.

    I am generally not a sissy about such things. Has anyone else had this problem with rebif? I don't have anyone else that can give me the shot. I am 2 weeks in and thinking this treatment was a bad choice for me.

    #2
    I wasn't a fan of Rebif, either. Too many injection site reactions, including one that went necrotic. Have you thought about Avonex? Same med, except it's done only once per week, and there aren't any injection site reactions because the injection is intramuscular. I've been on Avonex, Copaxone and Rebif, and I much preferred Avonex.

    Comment


      #3
      Hang in there....

      Originally posted by katvar View Post
      I started out on Copaxone. I had welts and some itchiness from it but nothing traumatic. Unfortunately it wasn't working. My doctor switched me to Rebif and I have been doing the gradual does increases.

      These shots really hurt. The medicine burns so much more than Copaxone ever did. I am literally crying and trying to talk myself through these shots each time. It is harder to do this every time.

      I am generally not a sissy about such things. Has anyone

      else had this problem with rebif? I don't have anyone else that can give me the shot. I am 2 weeks in and thinking this treatment was a bad choice for me.

      I've been on Rebif for over a year, it will get better

      The support nurses for ms lifelines are excellent they have helped me so much

      Honestly it took me about 6 mths to figure our all the little things on the way to accepting the drug into my body

      What I mean is.... It can really make a difference in how well you feel after the shot, the time of day that's best for you to take the shot makes a difference

      In the beginning I was taking it at night before bed to sleep through the flu like symptoms, this didn't work

      Of course I didn't know it for sometime. Now on Sunday I take my shot around 2 pm, Tuesday 3 or 3:45 pm, Thursday 4 or 6 pm, then Sunday start all over again

      The worst day is always Monday because Sunday is my "first" day of the week

      The reason I shot late on Thursday and early on Sunday is to close the gap of my fri/sat shot free days. The bigger the space of no shot between makes me feel sicker on Monday.

      I hope I'm making sense, also my best shots are after a hot shower my heated body accepts the shot and medicine much easier.

      I'm skinny so supporting almost squeezing the fat that I do have to inject in also makes it better

      Hesitation makes it more painful, especially if you take the shot out of the package and wait

      If I don't shower first I turn the heater on in my bathroom, warm washcloth to the area, dry it off, alcohol, shot, rub with clean dry washcloth(it works better than wiping with just a cotton pad after? Not sure why just does

      I was never a fan of Gatorade but this has also helped to you have to be very hydrated! I'm a water,tea drinker normally but adding the Gatorade helped a lot

      I take the aleve about an hour after my shot also and walking, moving helps the shot metabolize in the system I don't think it's helpful to shot then sit around.

      Moving really helps a lot if you can.

      My last MRI was excellent, so i believe the Rebif is doing it's job

      Another plus is shots are only 3xs a week not every night and I believe it's stronger than cop axone.

      I hope this helps everyone's body is different, use the nurses at ms lifelines, call them with any issues they want to help. Every bit of advice they've given me has been helpful

      It dies take some trial and error, I hope you find out what works quicker than I did, good luck!
      moment by moment Wendy Rochet

      Comment


        #4
        Sorry your having so much pain with the Rebif shots. You did'nt say if your using the injector. If you are and use it the way the nurse taught you it will burn but this is my personal experience. Be fore I load the injector I hold the needle upright and draw back on it a bit and take the cap off the needle first.
        If you use the bottom of the injector to pull the cap off it will pull some of the Rebif out onto the tip of the needle and that will make it burn. The only set back is you have to remember if you try this way is to take the end off the injector or you will waste a shot and that is expensive with the shots at almost $300 a shot these days. I hope this helps some as it has for me and I also always push the spring in so it has pressure on it to help weaken the spring a little bit as I feel they use way to strong a spring. I hope it works out for you. Good Luck

        Comment


          #5
          Katvar, your post was very interesting to me as I am seriously considering changing to Rebif and am interested to hear more responses. Redwings and Wendy, thank you for sharing your experiences and viewpoints.

          Redwings, I just don't think I have it in me to do an IM injection with the Avonex needle. I believe that will push me beyond my comfort zone. Wendy, it sounds like Rebif has been much more involved for you than I ever anticipated.

          Copaxone took me about a year to get used to. Initially, the welts were 2-3 inches large and easily lasted over a week and the injection sites felt like rocks under my skin. The shots are fairly easy now, the site reactions for the most part are better, but my skin is ruined.

          So, I have been seriously thinking about switching to Rebif from Copaxone. It will be three years on Copaxone in June, but legs and arms look quite awful!! Several days ago while shopping, I saw in the mirror how bad my thighs and arms looked and thought perhaps this was the signal that it was time to make a change. I have also had more flares in the past several years than the ten or fifteen years prior....so I wonder....is Copaxone working? Of course, I also wonder if my MS may have been worse if I wasn't on Copaxone and that the drug is really working. Unfortunately, as you all know, it just isn't that simple.

          Oh, what to do, what to do! I look forward to hearing more responses and experiences on Rebif.

          Katvar, are you thinking of going back to Copaxone?

          Comment


            #6
            Yes, try Avonex if you neuro agrees. I did not even feel my shot yesterday, I watched the needle go into my leg, but didn't feel a thing.

            I started out on Rebif, and felt the same way you do. I was non-compliant because as you said, those shots HURT, so the drug wasn't doing me any good anyway.
            ~Kim in NV~ Dx RRMS on the Spring Equinox 2008 , at age 44. *Aubagio* That which does not kill us only makes us stronger

            Comment


              #7
              I'm sorry!

              I'm sorry you're having a rough time! I have been putting my shot in the band of my underwear against my skin for about 30 minutes. My shots don't burn.

              Drinking alot of water the day of the shot and after helps ALOT. The times I have had the worse flu symptoms have been when I haven't drank enough water. I like Wendy's idea of Gatorade. I also have been doing my shots, Sunday, Tuesday, Thursday. I think I will try her times as well and see how that goes.

              Call your nurse or the lifeline! They help so much!!

              I had wanted to switch to Copaxone, but my neuro said you should give any of the MS drugs a year.

              The only site reactions I have had have been bruises. I think it is because I push down too hard.

              Sara

              Comment


                #8
                Took my shot at 1 pm

                Originally posted by Sara Angela View Post
                I'm sorry you're having a rough time! I have been putting my shot in the band of my underwear against my skin for about 30 minutes. My shots don't burn.

                Drinking alot of water the day of the shot and after helps ALOT. The times I have had the worse flu symptoms have been when I haven't drank enough water. I like Wendy's idea of Gatorade. I also have been doing my shots, Sunday, Tuesday, Thursday. I think I will try her times as well and see how that goes.
                Call your nurse or the lifeline! They help so much!!

                I had wanted to switch to Copaxone, but my neuro said you

                should give any of the MS drugs a year.

                The only site reactions I have had have been bruises. I think it is because I push down too hard.

                Sara

                I took my Rebif shot the earliest ever this Sunday, 1 pm

                I felt really good today. Tuesday I will shot at 3, Thurs at 5 then earlier on Sunday again..... Closing the (fri sat) gap has been a big help to me

                I wish I was brave enough for the avonex but it was too much for me to go intra-muscular for me I was pretty freaked out on my dx and having to give myself a shot already

                It is the medicine that burns when on the skin i wish I could try the technique of pulling back the syringe and taking the cap off prior but I don't trust myself with that either, I'd end up throwing medicine out

                But I will also tell when I pull the cap off I hold the auto injector horizontal then quickly turn it vertical then shot, if I hesitate and am feeling nervous for any reason- I've had some anxiety.... I sometimes look at the end off the shot if I see medicine on it I'll get a clean q-tip and wipe it off the auto inject w/out touching the needle
                moment by moment Wendy Rochet

                Comment


                  #9
                  Avonex

                  The IM shot is no biggie. I inject manually and do it slowly. Sometimes you can feel when the tip of the needle pierces the skin but that would be with any of the needles.
                  I only inject in my thighs and still don't have any reactions.

                  Comment


                    #10
                    I use the ice packs which come with the shipment to make the area numb. You really don't feel it.

                    Plus, there's an auto-injector pen coming out in May for avonex which will make it a breeze.

                    Comment


                      #11
                      I did not have auto injector at first. Today was the first day that I had that choice. Much better - less stress

                      I am going to give it a chance to work.

                      Thank you for all of the encouragement and ideas. It helps a lot to know I am not alone,

                      Copaxone is not an option for me because it did not work for me

                      Comment


                        #12
                        Well, my neuro took me off Rebif today. I have had alot of numbness even with being on steriods. I guess the combination of low WBC and the numbness.

                        Sara

                        Comment


                          #13
                          Keep me posted I'm still a newbie in this

                          Originally posted by katvar View Post
                          I did not have auto injector at first. Today was the first day that I had that choice. Much better - less stress

                          I am going to give it a chance to work.

                          Thank you for all of the encouragement and ideas. It helps a lot to know I am not alone,

                          Copaxone is not an option for me because it did not work for me


                          Please keep me posted I still consider myself a newbie in this whole situation, we can compare notes.

                          This site is really great, I feel that I can get some REAL answers from the pioneers, people who have done this or tried that and are straight about "their" experiences.

                          It's hard to " trust" the Drs when we all realize they aren't (well most of them probably) are not injecting themselves
                          with these knarly drugs

                          Today has been warm here in Montana, shot my right inner thigh, so much less hassle than in a cold house which reminds me....

                          We can't heat the medicine but when I remember I stick it in it's package tucked in my bra to warm with my body heat, this helps too,LOL yes I'm being totally serious, Wendy
                          moment by moment Wendy Rochet

                          Comment


                            #14
                            Keep us posted

                            Originally posted by Sara Angela View Post
                            Well, my neuro took me off Rebif today. I have had alot of numbness even with being on steriods. I guess the combination of low WBC and the numbness.

                            Sara
                            Keep us posted were all in this together I hope they find what will work for you, Wendy
                            moment by moment Wendy Rochet

                            Comment


                              #15
                              Been on Avonex since October--Had a relapse with new lesions so switching to Rebif per Dr. I am so unstable and scared

                              Comment

                              Working...
                              X