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How Long Will These Side Effects Last???

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    How Long Will These Side Effects Last???

    I am having a horrible time with Rebif. I was wondering from those who have been on the drug for a while.... will these side effects go away with time on the drug or will it be this way with every injection?

    I have experienced, severe chills, severe muscle aches in legs and lower back, severe abdominal discomfort, bloating, vomiting, diarrhea, loss of appetite, Severe headaches!

    This is horrible and I don't see how I can continue like this if this is the norm.

    I was on Copaxone for nearly 2 years and my Dr. advised me to switch because of disease progression. He suggested Tecfidera but my insurance rejected it until I tried Rebif first.

    #2
    Rebif

    Hi there!

    I was diagnosed in June and began treatment on Aug 8th. I too had horrible side effects. I was supposed to titrate to the 40mcgs and the Neurologist is keeping me on the 22mcgs for another 2 months. He prescribed 500 miligrams of Naproxen which is really helping. I no longer vomit, no chills or backache. REALLY helped!!!!! I get it.......believe me. I still get a headache and some nausea which is manageable but man-o-man I'm soooooooo exhausted, I still try and excersise and I've been have HORRIFIC spasticity in my right leg and will be going to therapy for light tissue massage. Please let me know what dose you are on at this point and how long youv'e been on. I wish the very best because I know this is tough.
    I will look forward to your reply. We both have to keep plugging. What I miss most of me is the energy and they've tried me on all sorts of meds. and I happen to be one of the unlucky ones they haven't work. That's why I keep lugging to excersise hoping my energy will regain its self. Keep positive.......attitude helps alot.

    My Best......
    Susie Q


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

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      #3
      Side effects

      Good morning.

      I've been on Rebif for 3 months. I did my first 44 mcg injection on Wednesday. I used to have chills and difficulty sleeping after my injection. The worst seemed to be the night after the injection. I found that taking an Advil pm before my injection alleviated nearly all of my symptoms. I still struggle daily with fatigue and balance but I'm working through it. Best of luck to you.

      John
      Diagnosed RRMS April 2014
      Trying to be the best dad I can!

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        #4
        John

        Hi John

        Question for you did you notice a HUGE difference with symptoms from 8mcgs-44mcgs????? And when when will you have another brain MRI????? I'm a newbie and asking questions about the drug for all of us. I haven't noticed anything in terms of improvement with symptoms. How do we even know if we're getting better. Not everyday is a bad day by all means.......but will we/you see better days? I've done well giving myself the shots and no unusual sight reactions with the exception of a bit pink and bruising following. I don't find them one bit painful etc....

        Susie Q


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

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          #5
          Susie,

          I haven't noticed any reduction in symptoms. The way my neurologist explained it to me was that it slows progression but doesn't change symptoms. I see my neuro in two weeks and I'm going to ask him about an MRI. This is really a strange disease. Good luck to everyone.
          Diagnosed RRMS April 2014
          Trying to be the best dad I can!

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            #6
            Rebif and "Do no harm"

            I'm on week 21 of Rebif and considering throwing in the towel over milder side effects than the original poster is reporting. Titration pack, and now into my second month of 44 rebijects. I'm newly diagnosed rRMS with symptoms only of rather infrequent low back tingling and some hot skin sensations on my thigh during a shower that persists for a few minutes.

            Rebif is actually making me far less functional thus far. The same day I started Rebif I also started the autoimmune Paleo diet (organic everything, grass fed beef free range wild caught no grains including rice wheat and oats, no legumes nuts or nightshade to avoid lectins no dairy eggs or soy). Lots of overlap to Wahls Paleo Plus.


            Headaches are frequent the morning after Rebif despite hydrating so much I wake up to pee several times interrupting sleep. Also I get joint aches and malaise. Yesterday was a complete waste for me as I felt like I'd played a football game everything aches so much. Every day I have that wasn't preceded by Rebif ... No fatigue, no soreness and no silver dollar sized red patches on my belly. Triceps and butt injection sites have worked best for me fwiw. I can't do stomach due to red blotches persisting for 2 weeks and really can't do thigh as I'm too lean in the thigh and 8mm overshoots the fat and hurts like heck.

            Ibuprofen (and assumedly naproxen ) does help a lot with the aches the two times the headache was so bad I couldn't take it anymore, but....nsaids kill glutathione levels and we want this important antioxidant to help us not to have to plunder it just to deal with an intervention where there's a study to suggest that it may not curtail the disability progression but simply reduce relapse frequency. NSAIDs are forbidden in paleo autoimmune diets for this reason and due to their tendency to irritate the gut (with adverse AI effects accordingly). Of course the lifelines nurse cheerleads liver threatening Tylenol or glutathione plundering and gut irritating NSAIDs when I bring up these challenges. Pharma to fix pharma.

            Given my early position in this journey, I'm strongly considering dropping DMDs for now and put my eggs in the Wahls and AI Paleo basket pending following mris and symptom monitoring. For me Rebif is worse than the disease for my current situation. The Hippocratic oath says first, do no harm.

            I'll also be barking up the possible Lyme disease tree and looking into that venue as there's apparently a rather under diagnosed Lyme prevalence and its hypothesized that MS is at least in many cases is a profession or symptom of a spirochete infection that can hide from standard Lyme tests.

            That my current neuro says diet can do nothing reliably for MS and that vitamin D and Rebif are my only hope suggests that I need a less dyed in the pharma wool neurologist. It's lamentable that effective treatments tend to take 10 years or more to make it into medical texts and get mainstream buy in. I know I don't have that kind of time so off we go!

            For those with aches and headaches... Did they ever go away? Or did your will to lament them allay?

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