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    Old 11-18-2005, 10:36 AM   #1
    AnitaD13
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    Anyone taking Rebif?

    I recently did a streroid IV for an exacerbation, until this my doctors had been "waiting for something to happen" so they could confirm a diagnosis. Well, on Monday I went to my neuro to see how the steroids worked, which they did wonderfully. She suggested Rebif. My husband and I have been looking at all these MS treatments and agreed. Today I have already received my auto injector and travel kit. Now waiting for the insurance to come through. It looks like I'll start my injections in about 2 weeks.

    Is anyone else on Rebif? What kind of side effects did you experience? I read that only 5% DON'T have flu-like symptoms. I'm hoping to be one of those 5%. I'm anxious to start, in a good way and bad I guess.

    This is my first time to post. I've been reading and it looks like you guys have a good community going here. Looking forward to your replies.

     
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    Old 11-19-2005, 05:15 AM   #2
    gyrl293
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    Re: Anyone taking Rebif?

    Hello Anita,
    I have been taking Rebif now for about 5 months ....Love it....I have never had any flu like symptom at all.....I make sure I take 3 ibuprofin before injection like 10min before and use an ice pack pre and post injection. I also make sure that I rub the site right after injection to massage the med around the area. Another tip is to switch site frequently...Right left right left and arm leg stomach arm leg stomach....Like I said I love it cause it's only 3 times a week and sub q as opposed to muscular injection which hurts more. However I can't wait until a pill form comes out but soon soon I hear =) Keep smiling and


    ManyBlessings
    Mari

     
    Old 11-19-2005, 02:35 PM   #3
    AnitaD13
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    Re: Anyone taking Rebif?

    Thanks, Mari, for your quick reply. That is very encouraging! My insurance was approved and it looks like I will be starting next week.
    I went to an MS seminar 2 weekends ago and they mentioned the pill, said it will be about 3 years 'til it's available. He said so far it has had excellent reports and appears that it'll be approved. That will be great!
    Thanks again!

     
    Old 11-19-2005, 09:28 PM   #4
    classylady
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    Re: Anyone taking Rebif?

    Hi Anita, I've been on Rebif since March 04 with very few problems.

    Make sure you premedicate. My MS Specialist advised 2 Tylenol + 2 Advil to start. I thought that was a little over the top, but, in the beginning while your body adjusts to the med, it turned out to be good advice. In a year and a half, I had one reaction. I gradually decreased my meds to 2 Advil, then 1-------then none. That night I got the chills and some muscle aches.
    Now I always take 1 Advil just as a precaution.

    Most of us titrate up from 4.4 two weeks, 22 two weeks, then the full 44 dose. Looking bacl. I felt a little increase in fatigue, but then I had the fatigue before starting Rebif.

    Follow all the advice like warming the med----I put it under my arm for just a few minutes. If you use alcohol pads to clean the skin, wait till it dries before injecting. Mine sting (just for a minute or two) if I inject too fast, so I tend to manualy inject all but upper arms and backside----they get the rebiject11, a great improvement over the last one.

    Most importantly, ROTATE THE SITES. I use 14, so I have over a month till I return to the same area. L&R lower thigh,l&R upper thigh, L&R saddle area (on you upper outer thigh), L&R lower abdomen, l&R upper abdomen below the waist, L&R butt high.(if you're not a nurse) imagine your butt divided into fours. Shoot into the upper outer quadrant----not the middle.
    Some folks have difficulty with their arms. I learned a simple technique on the MS forums.Put your arms straight up, bend it back at the elbow and the space is awaiting! Altogether these give me 14 sites. I've had no problems doing it this way. Also it's good to gently massage the injection site in a circular motion after the shot--it disperses the drug out of that small area. I like to put witch hazel on a cotton ball to do this

    Sometimes for some unknown reason, I get a sore (feels like a bruise)reddened area, but that is also much improved. Now the only time I see them is after taking a hot shower.

    Rebif's needles are 29 gauge, the smallest of all the crabs. I think that's one reason my sites have improved, and possibly my body has adjusted to this foreign substance.

    I just wanted to encourage you. We tend to post the negatives with the shots and not the positives (if you can count giving yourself 3 shots a week a positive)!!!

    I'm over 60, so if I can do this, you will, like me, adapt, adjust and months later it will become part of your routine.

    Good idea also, if your neuro hasn't requested it, to have blood work done 3 months after starting, then maybe another three months, then every six.

    My white cells went down some, liver enzymes went up only slightly. Now they are all in the normal range.

    I saved the best for last------no new lesions since March 04!!!

    Best wishes to you.

    Last edited by classylady; 11-19-2005 at 09:42 PM.

     
    Old 11-20-2005, 12:04 PM   #5
    AnitaD13
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    Re: Anyone taking Rebif?

    Thanks Classy Lady!
    I found your reply helpful and encouraging.
    Maybe I can share with you how it goes when I get started. They said my meds will be delivered on Tuesday. So, it'll be soon.
    Thanks again,
    Anita

     
    Old 11-22-2005, 07:44 AM   #6
    GV1234
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    Re: Anyone taking Rebif?

    I'll be starting to take Rebif in a few weeks. Has anyone had good results?

     
    Old 11-22-2005, 07:47 AM   #7
    GV1234
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    Re: Anyone taking Rebif?

    Any suggestions to prepare for using Rebif?

     
    Old 11-22-2005, 09:07 PM   #8
    Sharon Grace
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    Re: Anyone taking Rebif?

    Hi Rebif users! I am an ex-Rebif user but would like to pass my experiences along. I was on Rebif for nine months. Unfortunately, even with all my pre-medicating with Advil and Tylenol, it left me feeling "flu-like" all the time. I was disappointed, because I have heard lots of excellent things about it. Even the head of the MS clinic at Barrow Neurological told me it was great stuff! That's what I call a recommendation from the top! Anyway, I hope it works wonders for all of you! A bit of important info that your doctor may forget to mention - it is important to get a blood workup every three months while on Rebif. It can affect your liver enzymes so be careful - I asked for bloodwork every three months to monitor my liver function (my neuro would forget, but I never did). All my best to each of you Sharon Grace

     
    Old 11-23-2005, 05:48 AM   #9
    AllyG
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    Re: Anyone taking Rebif?

    Hi Anita,

    I've been taking Rebif since Nov 2003 and have had little or no side effects from it. For the first while I got the flu symptoms but this is manageable with paracetamol before and an hour r 2 later. After about 6 months I stopped taking the paracetamol and just made sure I took the injection before bed and slept it off. Recently I've been able to take it during the day and have had no flu symptoms which is great as I dont like taking the injection after a Friday nite out etc!!

    I wish you luck with your treatment. I must say it was fairly easy for me and a great relief to know once diagnosed (oct 2003) that I could do something about it. Although its not cureable YET, I am grateful we can treat it.

    Take Care.

     
    Old 11-23-2005, 01:45 PM   #10
    AnitaD13
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    Re: Anyone taking Rebif?

    Thanks to all for you help! I'm anxious to get started, it looks like I'll be starting on Monday or Tuesday. I've received my Rebif and injector and am waiting on the nurse to show me how to use it. All suggestions and help is appreciated.
    Here's a tip for GV1234: When the nurse called she told me I should start drinking half my weight in water each day. That's in ounces. Like if you weigh 150 lbs you should drink 75 ounces a day. She said if you do this it will help if you have flu-like symptoms. To keep you from getting dehydrated. Which is not fun, I was in the hospital for a week, when I was 18 from being dehydrated. Had no idea it was happening. The bad thing is, I'm not a water drinker. So, this whole MS thing is really changing my world. Wondering when you're starting Rebif?
    Thanks everybody!

     
    Old 11-27-2005, 10:43 AM   #11
    flic72
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    Talking Re: Anyone taking Rebif?

    Hi AnitaD13,

    When I was diagnosed a year ago my doctor first placed me on a steroid therapy for 7 days then after I was released I had to wait to be approved for my rebif. After I was approved in Feburary 05 I received my auto injector and supplies and my dosage in rebif 22 -- 3 times a week. When I had my first injection and subsequent injections I have had no side effects from the drug or from my injection sites. I took 2 ibuprofen before I had my injections for the first couple of months now I don't need the ibuprofen at all. I have had one relapse since being on the medication. When I relapsed I asked the doctor if he wanted to increase my dosage and he said "no" because he said that sometimes when you increase the dosage it can cause the body to reject the drug. The company has been good about checking in and sending supplies to me when needed. If the company calls you its best to ask for a second injector in case you lose the first one or if it breaks. Good luck in your recovery and in taking rebif I hope it works for you as well as it has for me. cheers

    Tammy (flic72)

     
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