I just wondered if any of you had anything to say about Rebif. I will be going on it after I have a 3 day course of IV steroids. I was supposed to start the steroid treatment yesterday, but I'm in southern Ohio, and we got over a foot of snow, and the nurse couldn't come out to my house. I am not currently on any medicine, so ANY insight would be greatly appreciated!
i am taking rebif. the main thing i would like to say is take tylenol or advil 1 dose 1 hour before injection and second dose 4 to six hours later. i have been on almost 3 months . on their website there is info and tips.
camille
Hi Heather,
Ive been on REBIF one whole year on the 12 th January 05.
Flu like symptoms took a few months to pass and I dealt with these by taking my needle around 7pm ( with two tabs of Panadol Extend - a 12 hour tab) went to bed after I felt the symptoms arrive (within an hour) and slept.
I use an auto inject needle (Rebiject) 3 times a week Mon, Wed and Fri and still have site reactions, which go away after a while.
Ive had 1 relapse ( as shown by another MRI) = TOTAL 3 and my general condition has incrementally gone backwards over the past year.
BUT...I intend staying on Rebif until something better arrives.
Goodluck with your treatment
Gary in South Australia
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I want to die in my sleep like my Grandfather;.... not screaming like the passengers in the back seat of his car
I'm on Rebif, have been for a year, and you get used to it. Although you may find that your immune system is easily compromised, it's not so bad. I do have a tip though, other than the tylenol before and after the injection, I used a freezer pack to freeze before (wimpy, wimpy, I know!! LOL) well, I managed to give myself freezer burn and, because my immune system isn't so much a friend anymore, am battling that out. My doctor advised that I use a topical anesthetic called EMLA. You put it on, cover and leave it for an hour, and your numb! Makes the injection easier to deal with. Not only does it not hurt when you inject yourself, but it lessens the anxiety. Good luck!
Thank you HeatherJM! I've got a neuro apt tomorrow and I am so getting a scrip for EMLA.
I've been on Rebif for about 4 months, give or take. My 'flu like' symptoms were/are horrible. Still wake in the night drenched with sweat, muscle aches, yada yada yada. I've never had the flu that bad.
Definitely get the Rebiject (have to get your doc to write a scrip for it). When that's ordered ask for the travel pack as well, just a handy dandy traveling pack for your Rebif.
Namaah, Emla is an over the counter topical cream, no scrip required! Makes it even easier! Make sure you've got some bandaids to cover with whiles its absorbing, or saran wrap, whatever.. Glad to help, anything to make it easier!!
Thank you thank you thank you! My injection site reactions - redness - last close to a month per site (depends on location). I'm too much of a wuss to comfortably inject my abdomen and thighs without having a mild anxiety attack.
I have been on Rebif for over 1year now and my flu symptoms completely disappeared after 3mths app. I would advise taking paracetamol before and during next few hours while flu symptoms are still a problem. I have to say that since taking Rebif I have had no relapse (thank god) and after about 6mths I felt better than I had for years (I was only diagnosed 14mths ago). My uncle had been on another interferon and suffered many relapses but since starting Rebif 6 mths ago hasnt had any. I usually heat up on radiator 1st and find it eases the sting of the medication. Best of Luck.
I have experienced the same as all the others that have posted. I take Tylenol before I give my shot. Helps with flu symptoms (although they don't seem to really bother any more) and taking the shot. I have site reactions too but they are getting less frequent as well.
I've also had good news while on Rebif. My seconde MRI showed that I actually showed a change in the size of one of the lesions I have. It actually seemed smaller. How much of this was Rebif, I don't know. But, I was encouraged.
