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#1 | |||
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Senior Member
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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. Jappy ![]() |
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#2 | |||
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In Remembrance
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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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#3 | |||
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Elder
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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. ![]()
__________________
Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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#4 | ||
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New Member
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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.
Barbara |
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"Thanks for this!" says: | Jappy (06-26-2009) |
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#5 | |||
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Senior Member
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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... ![]()
__________________
_____________________________________________ .....Judy SPMS -- FIBROMYALGIA -- Ouch! and Ouch! . |
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#6 | |||
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Wisest Elder Ever
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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.
__________________
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#7 | |||
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Elder
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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.
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#8 | |||
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Senior Member
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I'm so sorry jappy
![]() 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 ![]()
__________________
Multiple Sclerosis-Dx May 2007 . |
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#9 | |||
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Wise Elder
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Well, crap, Jappy, that's not what we were hoping for at all! Dang interferons! I hate 'em too.
I had the devil of a time on Beta and after 3 years of misery, I just quit it. I waited 6 months and started on Copax and after 6 years of that one, I ended my hate affair with injections for good. Like the others said, to me, the worst part was, and continues to be, that I will never know whether it helped, hindered, or did nothing but aggravate me! I agree with the idea of going back to half and talking to your doc about it. No one needs extra misery added to this nightmare disease. ![]()
__________________
—Cindy For every day I choose to play, I set aside a day to pay. —AMN "Sometimes plastic wrap just won't cling, no matter how much money you put in the meter." —From the Book of True Wizdom |
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#10 | |||
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Member
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Hi, Totally with you on this one.
I've been on Beta since april 15 and I'm looking forward to that magic 3 month date when it is said that the side effects could be over. I started on the full dose and never went back. I do my jab just before bed, I take two brufens and one codeine, put the leccy blanket on and go sleep through it. If I wake in the middle of it or forget the tablets, it's absolute hell on earth. It's miserable, shivery, painful awful flu. I hate it with a passion. But I'm sticking with it. I can't not try. hope you get through it soon. |
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"Thanks for this!" says: | Jappy (06-27-2009) |
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