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Med Dilemma
Thought I would pose this question as I am sure I am not the only one who has gone thru this..............
I am currently on Rebif,have been for over a year, the past few months I seem to run a fever (low grade) like 99.8 ALL the time, and on shot nights it goes up to over 101. yes I do premedicate,and medicate during the night and next day! MS lifelines nurse did not feel this was associated with the rebif....My neuro and I have discussed me going off and either trying Tysabri or Copaxone. I also get horribly achy with the rebif, again even though I medicate. neuro thinks maybe effects aren't wearing off from one shot to the next. All I know is I feel horrible most of the time with Sundays being my best day as I do my shots on MWF. I might also add that I dodthem at bedtime. my point is this...I am thinking about just stopping for awhile and seeing if I don't feel alot better. Anyone else go thru this? |
Renee
I have never been on Rebif, but here's my experience with Copaxone. I had extreme fatigue within 3 weeks of being on it. I kept telling my doc it had to be the C. Talked to SS nurse, nope, not a side effect. I did my own research and found that it was. Sure only about 1-2% of the people in the clinical trial and post marketing suffered from it, but with my track record with meds that would be ME. I stopped the C. Fatigue relented within 4 -5 days. Duh! I may not be a rocket scientist, but cause and effect sure did relate on that one! No more C for me! If you want to do your own research, it's your body, your choice. |
I would say, Yes, stop it and see what happens. If you feel better without Rebif then it as not the one for you. You could wait a while and try Copaxone or LDN or both or notta.:)
Let us know how it goes and good luck..:hug: |
It seems like you would only need to skip a couple of shots to know, since the dosing is frequent. Some people just can't do interferons.
Did you try varying your analgesic when you pre-medicate? The one that was no fail for me when I used Beta was, seriously, beer. I didn't have one flu symptom from day one. If you can get the go ahead for Tysabri, maybe you should jump at that anyway. |
This is exactly why Jim stopped Avonex Renee. Constant fevers and feeling horrible for days after. His fevers spiked at 102 sometimes and stayed around 99 until the next shot.
I agree that the only way to know is to try. If your fevers go away then it very well could have been the Rebif. I know Jim felt much better once he stopped Avonex and went to Beta. |
Thanks all. I think I am just going to stop for a while and see, I have treid diff analgesics..not working,of course to add insult to injury I do have the actual flu right nowtoo! Doc has ok'd me for Tysabri, I just told her I wanted to think about things for now!
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Just remembering being on Rebif makes me shudder. I was constantly achey and sick. I tried talking to the MS Lifelines nurse, and heard the same thing you did. After nearly a year of this, My neuro said to stop taking it for a couple weeks. I did, and felt SO much better.
You're not doing anything wrong, Renee..It may very well be that you cannot tolerate the interferons. You'll know in no time if it's the Rebif that's making you feel so bad. |
Oooh, and the real flu too. You poor girl. :hug: (wearing surgical mask)
At least you'll probably have a clear head and a break from feeling completely lousy while you weigh your options. Hope you're well soon! |
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I do think that part of the reason I felt better so quickly after starting Tyasabri is that I was not dealing with Avonex aside effects anymore. Also I was stuck in a lingering flare that had not responded to IVSM. It's easier for a drug to look good when you start on it far below your baseline. But now I am much better than my best baseline 18 months ago. I've had 15 infusions. |
Aw, Renee. So sorry you're going through this. I wish you good luck and better health with whatever you decide.
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Why do we have to feel so crummy IN THE HOPES THAT IT WILL DO SOMETHING? |
Hi Renee, I am one of those 'interferon intolerant' mser's. I was Avonex for 9 really bad weeks. I never stopped having the flu-like symptoms. Fever, worse than my usual exhaustion, my right eye nearly swelled shut. My dh finally looked at me one day and said enough is enough. It got to the point where I felt like I was poisoning myself when it was injection time. I can't use Copaxone because of severe site reactions. I'm happy to say that I will be starting Ty within the next week or two. My last Avonex shot was on Thanksgiving day, so I'm well passed the washout time. I did fall into a relapse even before I went off of the Avonex and I'm still dealing with that. I'm just looking at this as a new and hopefully better way to deal with this crazy disease. Good luck and I hope you feel better off of the interferon, if that's what you really want to do.
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I didn't see Mary's post before I posted this! I hope you feel better soon Renee!!! |
Hi Renee :Wave-Hello:
Sorry to hear how terrible you are feeling. :Sick: Hope things start getting better for you real soon, and whatever you decide to do about the meds is the right one for you. :Ponder: Joyce ( also known as Jappy ) :) |
Thanks guys for such kind responses, Mary is right it has been a very rough past two years and I am leaning towards the Tysabri just because of alot of the positive responses it has recieved in trials,that and I don't want a shot everyday! I am having alot of problems today no doubt because of the hi temps from the flu,vertigo,spasms,the lovely HUG, and both my eyes are so painful it isn't funny...thus why I haven't been on here today!
I know we all have a chronic illness,but dang it I'm ready to start feeling good!! MY MS GOAL.......to be able to borrow Mary's red high heels!! |
I have been taking Rebif for over 5 years. I need to take Tylenol or whatever when I inject or I still will run a fever. I inject in the evening. In the morning, I need to take more because I still have a low temp. I inject MWF and Saturday mornings are the worst days for me.
I am building my case to get off of this drug. (Whining...I want off.....) So....for you, will it hurt if you stop for awhile, a few days say and see how you feel? IMHO, I don't think it would hurt at all. It will just give you more info to tell the Dr. |
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