Stopped Rebif

A board to discuss the Multiple Sclerosis modifying drug Rebif

Stopped Rebif

Postby EyeDoc » Wed Jul 01, 2009 7:58 am

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:
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Postby CureOrBust » Wed Jul 01, 2009 8:04 am

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. 8)
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Re: Stopped Rebif

Postby Bubba » Wed Jul 01, 2009 4:18 pm

EyeDoc wrote:Well, I finally stopped taking my Rebif. I got increasingly frustrated with the injection site reactions.


Were you using the rebiject? I had injection site reactions when I went to the 44 dose. Now I manually inject and control the speed of the injection. It has stopped all injection site reactions. THANK GOD, (knock on wood) I dont have any side affects from Rebif. I go back for an MRI in July. I am interested to see if there are any new lesions....
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Re: Stopped Rebif

Postby NHE » Wed Jul 01, 2009 4:43 pm

EyeDoc wrote: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.


Have you considered Avonex? There are no injection site reactions since it's an IM injection and you only feel cruddy one day out of the week.

NHE
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Postby catfreak » Wed Jul 01, 2009 6:48 pm

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?

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Postby EyeDoc » Mon Jul 06, 2009 1:06 pm

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.
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Postby BEZALEL » Mon Jul 06, 2009 5:27 pm

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...... :)
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Postby OhKay » Wed Jul 29, 2009 11:37 am

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
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Low Red Blood Cell Count

Postby BEZALEL » Sun Aug 02, 2009 11:55 am

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. :?

Has anyone experienced it?

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

Thanks for a reply :)
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Postby scoobyjude » Sun Aug 02, 2009 8:38 pm

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.
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Postby BEZALEL » Mon Aug 03, 2009 3:33 pm

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....

:)
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Postby scoobyjude » Tue Aug 04, 2009 9:15 pm

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. :lol:
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Postby BEZALEL » Thu Aug 06, 2009 7:42 pm

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.
:roll:
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Postby 81Charger » Wed Dec 02, 2009 9:26 am

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
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Postby scoobyjude » Sat Dec 05, 2009 2:13 pm

I get this occasionally but it usually doesn't even last a day.
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
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