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Stopped Rebif - 2 months and counting

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    Stopped Rebif - 2 months and counting

    On rebif since for a while - think since 1990. I just stopped -no problems - just felt it was time. Seems like being on it for so long probably was not helping. Neuro says time will tell. In his eyes, I am paying roulette. Since off - more energy, less tired (ok still tired - less exhausted) and I know my attitude has changed... no injections to look forward to.

    Neuro says I may see a change in 7 weeks, 7 months, 7 years - no one knows. Just completed MRI to see if there are new lesions. I say no...

    I take this seriously but I think I needed a change. I have great faith - things will be ok. Not recommending anything for anyone else- this was just right for me

    stopping Rebif

    Hi Lysa,

    I have been on Rebif for a little over a year now.

    I would love to stop it, but scared of what damage could be caused from stopping the DMD.

    How about waiting for BG12?
    New study on vaping
    *****BEST INFO BELOW*******


      Originally posted by pnowsitall View Post
      How about waiting for BG12?
      That is going to cost way too much for anyone to be able to afford. $4557 a month.


        Don't you guys get it? The medicine is out there for a REASON. All of you who get on the healthy horseback riding I can do this on faith alone kicks, really irritate me. Did you ever stop to think that the medicine is found through faith and just have to maybe just try and find what works for them. If not, yeah, try everything because maybe medicine is not for you, but it's out there as possible treatment answers that are what you are praying for in the first place. You shod off medication like it's an inconvenience when it could be why you took a step today.

        Hate to break it to you but you're not going to get hit in the head by a lightning bolt saying all is healed. You might have to be the one to see the options that are out there and not expect your higher power to tap you with a magic wand. Your higher power might of laid out options to take under advisement. Yeah I don't sound happy but I'm not going to lie or be fake to appease people who don't realize that sometime your answers are in front of you, but you have to do the work for it. You want answers, they are out there. To those who leave it to faith, good luck. But realize your answers to your prayers might be right there in front of you and your prayers have been answered already.
        RIP Jenna's Beloved Momma
        Best MS Support System Ever
        7/42 - 12/12


          I think everybody should have the right to choose whether they take something or not without judgement. I have been on Rebif since 2000 I think and I haven't seen its done anything except make me feel lousy. I am still on it as I feel bullied by my neuro.

          I was reading a report awhile back in a nursing journal that indicated some studies are showing the interferons aren't really effective so I don't think anyone can say what is right for others.


            A person has the right to chose what to do and what they believe. Doesn't mean that don't get it or don't understand. I personally put more faith in God and in my ability to think for myself and know how my body feels.

            I also recently stopped a medication (not Rebif). I was on it over 7 years and felt like crap most of the time and was miserable . Now I feel alot better and have no regrets so far and I don't know if I'll return to a medication or not. Guess time will tell.

            Every case of MS is different and I'm sure anyone who has went off medication does not take it lightly.


              Originally posted by JennacydeL View Post
              You shod off medication like it's an inconvenience when it could be why you took a step today.

              But realize your answers to your prayers might be right there in front of you and your prayers have been answered already.
              Okay, I don't know who else needed to hear that but I did. Yeah, a year later......
              Dx MS (RRMS) 7/14
              Dx Myastenia Gravis 8/14
              No treatment selected yet


                I stopped Rebif too.

                Hi Lysa.

                I used Rebif for a while and stopped using it in 2011. It made me feel awful and there was not proof that it was doing anything for me. My dr. also thought I was playing roulette. I am terrified of needles so it was an all around losing situation for me.

                Here we are 3 years later. I don't have to get through the day with flu symptoms on top of the fatigue, pain and numbness. Nothing has dramatically changed in my MRIs.
                And yes, as you said, my attitude is also much more positive without it.

                The important thing is that regardless of what anyone tells you, you have to make the decision whether or not to treat your disease. You have the right to say no regardless of what anyone thinks. You have the right to change your mind. It's one of the best things about the autonomy we are guaranteed in the Patient Bill of Rights.

                I hope you continue to feel better. Wish you all the best!


                  Started & Ended Rebifin

                  Hello, I'm new to this but needed to share my story. I was just diagnosed about a month ago & immediately had 5 days of infusion that went extremely bad. Now on my 2nd week of Rebif and have decided to stop. My original symptoms were mild compared to others and intermittent. Now they have become 100% worse. I have tingling/numbness that started in my feet and within 3 days it's moved up to my thighs. My blood pressure that was controlled for the last 17 yrs has dropped very low it made me ill so I stopped taking it after several calls to docs. I feel all this is a side affects of Rebif but nurses don't. I'm so frustrated because everyone wants to blame my diagnosis that Im not sure I believe. I have a appointments in 2 wks one with my BP doc and then neurologist. I'm thinking I need a second opinion before I continue on Rebif. Anyone have similar symptoms?