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Old 06-25-2009, 08:38 PM #1
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Default Side Effects Awful

I was doing pretty good on the lowere dose of Rebif.

Last night I gave myself the highest dose. I woke up at 3am
and I had a fever and the body pain was terrible.

It also seemed to aggrivate the Fibro more and there was not one
spot in me that was not hurting. I even felt like my teeth were aching.

Took the meds to try and counter effect the symptoms. It helped a
little. All day today I was in bed. When I had the flu I didn't feel this bad.
Also felt nausea and did not want to eat anything. All I wanted was
something to drink.

I hate it, hate it. My anxiety is on full speed also.

Friday night I have to give myself another shot. I am now so scared
how I am going to feel. This is the dose that I am to stay on from now on.

When I was slowly graduating upward with the first doses, I didn't feel
to bad, but now jumped from 22mg to 44mg.

Has anyone else had a problem like this? If this is the way I am going
to feel each time I take a shot, I don't know if I will make it.

Thanks for letting me rant. Telling you about my feelings at least I
know that you really understand.

My children are wonderful about all this, even though they have seen
me go through a lot in all these years, you have to personally go through
the symptoms to understand.


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Old 06-25-2009, 09:33 PM #2
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Wow, Jappy, I am so so sorry, that you are having this horrible reaction to Rebif. Other people will say...hang in there and wait it out, but not me....I would stop the dang stuff right now....But that's me.

Feel Better...with Love, Sally
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Old 06-25-2009, 09:51 PM #3
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Stay on the half dose and let your doctor know! The same thing happened to me. I had the option of staying on it at half dose. I believe that trials have shown half dose to be almost as effective as full dose.

Feel better soon.
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Old 06-25-2009, 10:53 PM #4
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I am sorry to hear about the bad side effects. My Dr. wants me to start on one of the Injectibles. I have been very lucky and have not had a flare for 3 years. He wanted be to do the injectibles then and I said I wanted to wait and manage without so I only did a 5 day iv steroids course and have done pretty well until now and have new symptoms and will be doing a 3 day course of iv steroids starting monday. He talked to me about the injectibles again and I still am afraid of the side effects. I react to everything. I hope things get better for you soon.
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Old 06-26-2009, 03:22 AM #5
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Awwww Jappy, I'm so sorry the Rebif is doing a number on you -- the wrong number. Those side effects sound like the ones I experienced while trying to take Betaseron. Avonex gave me fibromyalgia (my neuro mentioned another MS patient of his had the same thing happen) and by that time it was too late for Copaxone, soooooo.......it's LDN for me with none of that stuff!!! Have you ever tried or considered it??

All the best whichever direction you choose...
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Old 06-26-2009, 05:12 AM #6
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I got the same side effects from Betaseron. I believe all the Interferons have the same effects. Won't ever inject that stuff into my body again. Like Judy and Sally, it's LDN now and none of the nasty side effects.
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Old 06-26-2009, 08:20 AM #7
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There are folks that need to titrate up more slowly than others. Its not written in stone that you must start the full dose now. give your body more time to adjust. Make sure to call your md and ask. Call the rebif nurse, and tell them your having this trouble.

They want to keep you on the meds, and if your miserable, its more than likely that you wont. They will back up and keep you comfortable.

Hang in there.
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Old 06-26-2009, 08:31 AM #8
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I'm so sorry jappy . I had the same problem with Avonex. I felt horrible the entire 9 weeks I was on it. I was working then. I could barely function.

I agree with Wiz. Talk to your doc and stick with the half dose. I dreaded shot day. Sometimes it would take me half an hour with the needle hovering over my thigh before I could inject. I felt like I was poisoning myself.

Feel better soon .
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Old 06-26-2009, 10:00 AM #9
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Yikes girl! I agree w/ asking to go back to the lower dose so you get use to it. You could always waste some and make your own 22s. Try to hang in there!

Last edited by Taffy; 06-26-2009 at 01:50 PM.
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Old 06-26-2009, 12:13 PM #10
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Sorry to hear the side effects are bad for ya. Totally agree with asking doc about trying the half dose for awhile.

I know I learned the hard way that I have to take Aleve as a premedication. The one time I didn't - a lot of pain and major chills.

Hope things work out for ya.
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