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- - Rebif? (https://www.neurotalk.org/multiple-sclerosis/37060-rebif.html)

Carolynj

01-23-2008 05:01 PM

Rebif?

Hello to everyone! I made the jump from another forum and really like what I have seen here so far..... :cool:

I received my final diagnosis in December, 2007. I am not really sure whether to be glad or sad but I am hanging in there!! I have started Rebif - had 2 doses from the titration pack - and I have some questions!!!

First is fairly straightfoward I think - will have this headache forever? :eek: It isn't real severe and it kind've comes and goes, so it isn't something I can't deal with but I would rather not have to!!!

I have waves of crumminess during the day after my injection. Just a kind've washed out feeling - but like I said - that comes in waves. So I guess as far as side effects go it could be worse. But that is my next question.....as I increase the dose - will the crummies get worse? :confused:

Thanks everyone, in advance, for your help!

I think I'll stick around! :grouphug:

ernhrtfan

01-23-2008 05:25 PM

ive tried rebif and betaseron both made me feel worse than the ms.
stiffness,fatigue,so I gave it up,feel better without the meds.
each person reacts differently im sure.
wish you the best:)

kellijo

01-23-2008 05:31 PM

I've never been on Rebif but was on Beta. Kinda similar side effects. I did also have the waves of crumminess and yes as I was increasing my dose they would get a little worse.

But, once I was on the full dose for awhile my body adjusted. I also had headaches. I have always had problems with those. I get them all the time.

Last weekend had one so bad that would not go away. Told my fiancee to either get me a pill or a bullet one or the other didn't matter. Luckily he came back with a pill.;)

MooseasaurusRex

01-23-2008 06:21 PM

I was on Rebif for a year or so after I was dx. (Hated it).
I remember the 'crummies' but I think that was part of my exacerbation. Not sure if it was the shots or not.:confused:

Either way, I hope you feel better soon.:)

pennstater

01-23-2008 10:00 PM

Hey Carolyn,

With Rebif, make sure you stay really hydrated. I still get a headache if I'm not great with the water, both day of and day after shot. I actually try to get an extra 16 oz. in. most days for that reason.

I did feel a difference after bumping up from 22 to 44. While some people don't need it, I still need to take Alleve before the shot, and then the following morning. If not, I run a slight fever. So I've found if I get the Alleve in ahead of it, the fever doesn't appear.

Hope your adjustment goes quick. If you have any questions, feel free to PM me.

Kathy

Carolynj

01-24-2008 07:29 AM

Thanks for the advice! I thought I had heard something about drinking extra water but wasn't really sure..... that could be an easy solution - today I will drink!

babs954

01-24-2008 10:14 AM

Carolyn...........I have been on Rebif for 4 going on 5 years. The headaches are the number 1 side effects. The home nurse from Serono/Pfizer that comes to see me, told me to take aleve about 30 min. before my shot and about 4 hours later try excedrin migraine. Keep well hydrated and take the shot early enough in the evening so I am sleeping through the worst of it. Rebif peaks at 8 hours, keep that in mind.
Even after all this time, I understand the crummies......and there are times I really have to convince myself that, "this is better than the alternative!"
Feel free to PM me if you have any questions........Barb

Carolynj

01-24-2008 01:24 PM

Right now I am thinking that the crummies aren't as crummy as I thought they were going to be - I am just hoping I'm not fooling myself!
I definately agree - I feel like I am finally trying to fight instead of just waiting for the next symptom to appear and hoping that it isn't too bad.
Even after 3 treatments - I am feeling more positive and not so defeated....
:Grin-Nod:

pennstater

01-24-2008 10:23 PM

Hey Carolyn

Glad to hear you are feeling more positive. It really helps when dealing with the diagnosis. A while ago, in another world, someone had said that when they inject, they picture themselves attacking the MS. I go back to that on days when I just don't want to inject. It puts me back into a feeling of control (not that I'm a control freak or anything);)

Hope things keep going well for you.

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