Stopped Rebif

EyeDoc · Posted: Wed Jul 01, 2009 8:58 am Post subject: Stopped Rebif

Well, I finally stopped taking my Rebif. I got increasingly frustrated with the injection site reactions. I have been relapse free for over two years, but I still have the daily crud we all deal with. Truth be told, however, I feel like my fatigue has been better since stopping the Rebif completely.

Today I will probably chastise a patient for stopping their medications early. Yes, even docs can be hypocrites Twisted Evil

CureOrBust · Posted: Wed Jul 01, 2009 9:04 am Post subject:

I stopped Rebif as it was worse for me than the disease.

I have tried other medications until I found what I thinki worked for me. Do you have any plans on trying other treatments?

I'm sure most people understand you took a "Hippocratic" oath, not a "Hypocritical" oath. Cool

Bubba · Posted: Wed Jul 01, 2009 5:18 pm Post subject: Re: Stopped Rebif

NHE · Volunteer Moderator Joined: Nov 21, 2004 Posts: 1221

catfreak · Posted: Wed Jul 01, 2009 7:48 pm Post subject:

Eye Doc,

I stopped Rebif because, like Cure, it was worse than the disease for me. I have to say I hope I never have to take an interferon of any kind ever again.

I am doing the Tysabri infusions now and feel much better. What is next for you?

Cat
_________________
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.

EyeDoc · Posted: Mon Jul 06, 2009 2:06 pm Post subject:

I don't know what is next. I was on Avonex for 2-3 years and mostly symptom free. I had the occasional nighttime flu symptoms, but it was rare. I was switched to Rebif b/c 3 years ago I had a couple of relapses.

I have not discussed stopping the med with my neurologist yet. In fact, I have not seen him for awhile. No, I am not in denial. I know I have MS. I feel it every day.

I guess I am ultimately hoping the oral drug will be available soon.

BEZALEL · Family Member Joined: Apr 03, 2009 Posts: 44

Hi EyeDoc,

I am on Rebif since Dec. '08, and thanks G'd no Flu-like Symptons.....

I just wanted to say, yes I would prefer a pill to the shots myself, but I had been to a lecture on the meds that are available and are coming out, if they pass the FDA at Mount Sinai Hospital w/ Dr. Aaron Miller, and the side effects on the pill sound not appealing either......

So hope you find something that make you feel better...... Smile

OhKay · Posted: Wed Jul 29, 2009 12:37 pm Post subject:

Hi Eyedoc,

I started taking Rebif in June 08.

I decided to stop it at the end of March because I convinced myself it wasn't helping, and I had an increase in depression symptoms with a new onset suicidal ideation.

When I saw my new neuro in April, she insisted I restart the Rebif. I pre-medicated and only injected 1/2 of the syringe, as directed. I woke up in the early morning in rigors, and with a temp of 104F!

I'm back up at 44mcg, and the side effects are mild now. Aleve works a little longer at managing S/E's for me.

On the up-side, I just found out that I only have 2 new lesions since starting Rebif. Most of my symptoms have been from old activity, I guess.

I usually can't inject manually anymore. I use the rebiject most of the time, but I find it's too tough on the stomach and legs. So, when those spots come up in the rotation, I have to ask my DH for help.

Just be careful if you decide to restart Rebif. Demand the titration pack! You don't want to find yourself with severe symptoms when you restart.

-Kay

BEZALEL · Family Member Joined: Apr 03, 2009 Posts: 44

Hi,

I started Rebif in Dec. '08, a month ago, my blood test showed that that Hemoglobin (?) and Iron is down. I went to a Hemothologist, still waiting for my results!!! Rebif's side effect is also Low red blood cell count. Confused

Has anyone experienced it?

I don't feel anemic......

Thanks for a reply Smile

scoobyjude · Posted: Sun Aug 02, 2009 9:38 pm Post subject:

No, but I have had consistently low white blood cells since beginning Rebif. I have been told by my gp and neuro that alone this is nothing to worry about. All my other blood tests are normal.

BEZALEL · Family Member Joined: Apr 03, 2009 Posts: 44

thank you scoobyjude......

i am feeling fine......my other bloodtest are ok.....except the thyroid, but i had that before ms.....

am tired off calling to find out what happened w/the bloodtest result.

will see my neuro in sept. and have him check on the iron etc. as well....

Smile

scoobyjude · Posted: Tue Aug 04, 2009 10:15 pm Post subject:

I see mine in Sept also and will tell him my white blood cells were lower than last year. We'll see if he cares. At this point in my MS I don't worry about anything unless it affects my daily activities. I think I stay saner that way. Laughing

BEZALEL · Family Member Joined: Apr 03, 2009 Posts: 44

you are right, am making myself otherwise crazy, thinking already i am falling apart. but if it is just a side effect from the rebif....oh well, will call tomorrow the hemothologist again.......but did call my internist, and have not heard back from him....but i am fine, so hope the next bloodtest will show more positive, if i have any blood left to check.
Rolling Eyes

81Charger · Posted: Wed Dec 02, 2009 10:26 am Post subject:

My neuro took me off as well because my white cell counts were low. It's been 2 weeks now but for the last week I've had a flutter or twitch in the muscle under my left eye that will come & go. I was hoping that it would stop but so far it hasn't. Has anyone had any similar things & did they stop or not until you started back on the meds?

Thanks Glenn

scoobyjude · Posted: Sat Dec 05, 2009 3:13 pm Post subject:

I get this occasionally but it usually doesn't even last a day.
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Dxed Jan 2006. Sx since 2002. Rebif since March 2006. "When one door closes, another opens but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." Alexander Graham Bell