REBIF question

Ok I have been recently switched to Rebif... so recent in fact I still have the script on my coffee table... I have taken Betaseron in the past for about 6 months and the side effects were terrible so I switched to Copaxone. I have recently came to the realization that, after over 1 year, Copaxone was ineffective for me, so I have stopped taking it!

I know that Rebif is like Betaseron in the fact that it is an interferon. I am familiar with the listed side effects. My concern is that I will have the side effects that I got with the Betaseron. With Betaseron, I was on disabilty for the entire 6 months that I took it because the fatigue was so great. I was extremely depressed, with suicidal ideation, as well as became hypertensive. I ended up taking over 14 pills a day to combat all the side effects of the Betaseron for me. I hear they say after 6 months the side effect lesson and life returns to a more normal state, but unfortunately, I was unable to stick it out any longer.

My question is for those that have/are taking Rebif. How are the side effects for you? If u have taken Betaseron in the past and can compare the side effects of each, I am curious to know what you think.

I am very hesitant to start Rebif because of my experience with Betaseron. I am in my final semester for my BSN and need my fatigue level to not get worse! lol i am recently married too =) and would like to have a few months with my new husband not wanting to kill myself! I am hoping to get a "no Rebif is TOTALLY diffrent," but I doubt it. I know that taking therapy is one of the few things I can do to fight back too... I feel stuck between a rock and a hard place...

 

Hi Sandy!

I have been taking Rebif since January 2004 (almost 2 years).  I am very fortunate in that I was able to "skip" most of the usual side effects.

I did 20% of my Rebif for 2 weeks (what an expensive waste), then 50% for another 2 weeks.  I use the auto-injector (Rebiject), and for the first couple of months I always took 1 Ibuprofen and 1 Tylenol a few hours before my injection.  I've always done my injection late in the evenings (around 10:00 PM) so that I could sleep through possible side effects.

I do my injections on Sunday, Tuesday, and Thursday nights so if we want to go away for the weekend I'm needle-free Friday and Saturday, and do not have to worry about it until Sunday night.

Others I know who had the side effects with Rebif said the problems lessened/ went away usually within 6 months.

Best of luck,

TLC

Sandy, I can't tell you that "Rebif is totally different". I would say that it's much worse! I personally would run from the Rebif!!!! I took Rebif for five months and was absolutely miserable the entire time! I think I had every known side effect and a few that had to be looked up! Thankfully, I did not have any problems with depression. I have now been on Betaseron for eight months and it's wonderful in comparison!

With the Rebif I was having injection site reactions as large as a softball in diameter (Beta is quarter sized) and it burned like crazy. I tried every trick before and after injection - heat, cold, orajel, dermaplast, alcohol, no alcohol, injecting after warming, leaving it out a week, antibiotic cream, corisone cream, etc. EVERYTHING suggested, I tried. I also began to have migraines after every injection. Then, I began to have migraines everyday with or without an injection the day before. I have migraines now even on the Betaseron, but they're very infrequent in comparison to when I took the Rebif.

I can relate to the school thing - I'm in grad school. If you're not having attacks, I would probably stick it out without meds until after you finish school. I've read about lots of people having decreased fatigue with Betaseron, but unfortunately, I've not been one of those lucky people.

Good luck with whatever you decide to do!

Post Edited (moscrapbookqueen) : 10/29/2006 3:34:31 PM (GMT-7)