Why I quit rebif

Miss_Feisty · Newbie Joined: Oct 05, 2008 Posts: 9

I jumped on the therapy band wagon and lasted 6 months.

I too suffered from the "flu like" symptoms.....
Head ache, nausea, cold sweats, fever, weakness, depression, stomach problems, constipation, female problems and large skin reactions (lumps, bumps and bruises).

I don't think I'm the only one who can say this interfered with my quality of life.

Okay, so it's supposed to do "good" in the long run. What about the here and now? So I feel like I want to crawl in a hole and die, call the rebif support team (who are helpful) and dose myself up on advil and benedryl. Wow what a sight I've become. This is complete b.s.

I am a trooper and toughed it out until I woke up one day and did not want to get out of bed. I finally hit my lowest point. It was not the challenges of MS that did me in.....it was the thought of one more day on the drug.

This drug may work for people, but it was not for me. I am normally light hearted and happy under any circumstance, but it is horrible to be on a "guinea pig" drug and have professionals minimalize the effects on a person's day to day life. If I hear "take a tylenol and a glass of prune juice" one more time, I will go insane.

MS altered my life but rebif changed it even more. I go to sleep every night dreaming that I, one day, will have the opportunity to hook my neurologist up to an ms simulator. This brings me joy.

I don't want someone to suffer with ms but those who treat it may have a better understanding. I am taking a break from the CRAB meds. Although in the future, after another severe relapse, I may be scared into trying a new one.

Until then.......To those of you who are unaffected and have hope and faith that this medication is working for you.....I wish you the utmost best.

I feel for everyone with this disease and I pray you all have the strength and courage to live with it, one day at a time.

CureOrBust · Posted: Sun Oct 05, 2008 6:19 pm Post subject: Re: Why I quit rebif

I too gave it a try, but found it affected my life more than the MS itself also.

ursula · Posted: Mon Oct 06, 2008 6:19 am Post subject:

I was on rebif for a couple of months, too.
I also had plenty of side effects!
The worst side effect was nausea (got also worse when I dared to drink only two sips of beer..).
I think most of the neurologists just can´t imagine how bad you can feel on rebif!!

Luckily, my doctor didn´t talk me into an other interferone.
The only alternative to taking nothing for me was copaxone, I´ve had no side effects any more.[/i]
_________________
ursula

Miss_Feisty · Newbie Joined: Oct 05, 2008 Posts: 9

Rebif nurses offer more support than I could have imagined but it is the neuro who should be able to say..This is or is not working for you...point blank.

I have not encountered the support for quitting. I get this look of confusion from my friends and family. In a time of doubt, and the need and want to find a solution, it is indeed tricky business to self evaluate medications. Always going back to, "am I doing the right thing".

When and when not to be a team player, is the ultimate question.

I have found my medical practitioner to be very supportive, thank heavens.
And this forum has made a huge impact, knowing there are others who understand.

I look forward to researching other alternative methods.

Thank you for the welcome Cureorbust. Very Happy

Ursula: I'm happy to hear you've found the right "one".
Copaxone scares me.....more holes in my body. I'm afraid I'll leak if I drink water...haha. How are your injection site reactions?

ursula · Posted: Thu Oct 09, 2008 10:31 am Post subject:

Hi Miss Feisty,

there is like 5 min. burning after the injection - that´s it.
besides that, my fatigue has completely vanished since I started with copaxone.

Have you found "the right one", too?
_________________
ursula

Punchy · Posted: Wed Oct 15, 2008 3:32 pm Post subject:

I quit Rebif too, after a year.
I should have quit at 6 months.

I have not told anyone in my family except my husband, who witnessed first hand what it did to me.

I didn't even realize how bad it was until I was off of it.

The night I quit, I had a solo party and drank wine while I squirted it all down the sink drain. Very Happy

lovelisaz · Getting to Know You... Joined: Aug 05, 2008 Posts: 10

Miss Feisty - I am trying to figure out "am I doing the right thing" for my daughter who was just diagnosed. It so hard when someone else's health is in your hands. I have nightmares about it. She is miserable on the rebif. I can't even get her out of bed in the mornings after her injection. We are considering switching to Copaxone but I am afraid her anxiety about the injection will be greater because it is daily.

patientx · Family Member Joined: Sep 11, 2008 Posts: 51

Lovelisaz,

If you're wondering about using meds at all, in my opinion it is worth it. The DMDs have been criticized for their limited effectiveness, but why not use them until something better comes along? And everything I have heard and read indicates that the earlier you start some form of treatment the better.

If your daughter is having so much trouble tolerating the side effects from rebif, then she may benefit from switching to Copaxone. That's what I have been using, and the daily shot is no big deal. There is some pain around the injection site, but that doesn't last long. Others have reported injection site reactions, but I haven't seen these yet. The actual needle is painless, and the shot becomes routine.