Why I quit rebif

A board to discuss the Multiple Sclerosis modifying drug Rebif

Why I quit rebif

Postby Miss_Feisty » Sun Oct 05, 2008 12:32 pm

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.
User avatar
Miss_Feisty
Family Member
 
Posts: 93
Joined: Sat Oct 04, 2008 3:00 pm

Advertisement

Re: Why I quit rebif

Postby CureOrBust » Sun Oct 05, 2008 5:19 pm

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

Miss_Feisty wrote: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.

Or would a better dream be of a machine that simulated the feeling of being on Rebif!

Miss_Feisty wrote:Although in the future, after another severe relapse, I may be scared into trying a new one.

I switched to Lipitor, and noticed some improvements (for me). This is an opportunity for you to try some of the "off-label" treatments to find what works for you. On this site you can find out about LDN, Antibiotics, Statins and more.

and welcome!
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby ursula » Mon Oct 06, 2008 5:19 am

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
User avatar
ursula
Family Member
 
Posts: 82
Joined: Mon Sep 22, 2008 3:00 pm
Location: germany

Postby Miss_Feisty » Thu Oct 09, 2008 5:36 am

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. :D

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?
User avatar
Miss_Feisty
Family Member
 
Posts: 93
Joined: Sat Oct 04, 2008 3:00 pm

Postby ursula » Thu Oct 09, 2008 9:31 am

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
User avatar
ursula
Family Member
 
Posts: 82
Joined: Mon Sep 22, 2008 3:00 pm
Location: germany

Postby Punchy » Wed Oct 15, 2008 2:32 pm

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. :D
User avatar
Punchy
Family Elder
 
Posts: 173
Joined: Tue Mar 06, 2007 4:00 pm
Location: Toronto, Canada

Postby lovelisaz » Thu Nov 06, 2008 7:59 am

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.
User avatar
lovelisaz
Getting to Know You...
 
Posts: 10
Joined: Mon Aug 04, 2008 3:00 pm

Postby patientx » Thu Nov 06, 2008 12:05 pm

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.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby Miss_Feisty » Sun Dec 14, 2008 1:07 am

lovelisaz: I can't imagine how you feel caring for your child and having the constant thought of "doing the right thing". It must be incredibly difficult.

At least you are doing something...you are also questioning the side effects of the drug.

In my "unprofessional" opinion, if your child is still feeling horrible beyond six months, discuss it with your doctor, be insistent and listen to your gut instincts. There are other medications to try, it's not easy either way, but if you can find something that will work, it will be worth all the trial periods.

As a parent, I would have a really good talk with the doctor and do your own research on the benefits of each drug.

I have been off rebif for 3 months now, my general well-being has improved and I can at least laugh again when my body acts up. I haven't tried an alternative yet (I admit I'm a wee bit chicken to go through it again, I need a break).

All my best to you.

[/u]
User avatar
Miss_Feisty
Family Member
 
Posts: 93
Joined: Sat Oct 04, 2008 3:00 pm

Postby Bubba » Wed Mar 04, 2009 9:50 pm

ursula wrote: (got also worse when I dared to drink only two sips of beer..).
.[/i]



Beer? OMG, I was close to choosing Rebif but if I cant drink beer, I dont want antrhing to do with it.
User avatar
Bubba
Family Elder
 
Posts: 486
Joined: Fri Feb 13, 2009 4:00 pm
Location: Turkey Creek, Florida

Postby flautenmusik » Thu Mar 05, 2009 6:37 am

Bubba wrote:
ursula wrote: (got also worse when I dared to drink only two sips of beer..).
.[/i]



Beer? OMG, I was close to choosing Rebif but if I cant drink beer, I dont want antrhing to do with it.


Bubba-

The side effects on Rebif are different for everyone taking it. Some have horrible flu side effects, headaches, or even anxiety. I will tell you that I have never experience one side effect, so it was a good choice for me.

Several have tried one drug and decided that it didn't work for them and switched to another. I suggest you take whatever your gut tells you and see if it is a good fit. You can always change therapy later.
User avatar
flautenmusik
Family Member
 
Posts: 49
Joined: Wed Feb 04, 2009 4:00 pm

Postby catfreak » Thu Mar 05, 2009 9:19 am

Hey bubba,

Some folks react differently so don't stress. I am not a drinker but I worry more about alcohol (if I do have a drink) and the other drugs I am on than the Rebif. You would need to speak to your Dr about how much beer you drink.

GF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby ursula » Fri Mar 06, 2009 7:14 am

I´m sure, if every neuro had to take Interferons for a couple of months, most of them would be a bit more reluctant to recommend it as first line therapy.
(the doctor from my insurance company: "about 50 % quit due to side effects" - they should know..)
If I had known this before..!
User avatar
ursula
Family Member
 
Posts: 82
Joined: Mon Sep 22, 2008 3:00 pm
Location: germany

Postby Miss_Feisty » Sat Mar 21, 2009 10:41 am

Beer? OMG, I was close to choosing Rebif but if I cant drink beer, I dont want antrhing to do with it.


Bubba, I hope that was sarcasm...haha. It takes one to know one. :wink:

Joking aside, it was not for me but there are success stories.

I suppose my bitter post came from the surprise of how horrible I felt. I suppose we expect the side effect list to be for "rare people", not a REAL list of things that really do happen. I just seemed to have them all and it burst my bubble of hope. I still feel reluctant to try another CRAB, maybe next year when my chicken syndrome is cured.

I'm also building a homemade rebif simulator for my neuro. It consists of clothespins and a cast iron frying pan so far but I don't want to give too much away in case a patent goes through. :)

Good luck with whatever you choose.
User avatar
Miss_Feisty
Family Member
 
Posts: 93
Joined: Sat Oct 04, 2008 3:00 pm

Postby Bambookoo » Mon Apr 06, 2009 1:44 am

hey
i am switching to rebif from copaxone
i never thought it would be this bad
well by sounds of it
i haven't actually started my dose yet
i have been on copaxone for about 6 months and have finaly got used to it
the problem i have is i am moving to japan and they do not have copaxone there
well the only thing to do is pray i dun have these problems
i keep you all posted
User avatar
Bambookoo
Newbie
 
Posts: 4
Joined: Sat Feb 21, 2009 4:00 pm

Next

Return to Rebif

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service