Rebif, Any "GOOD" reports?

judy-m said...
I'm about to start taking Rebif. Has anyone anything good to say about Rebif.
Relief of dizzy, light headed, pressure in the back of the head? And, how does anyone pay $20,000 a year for this stuff? I sure need a good report from someone. I don't see many on this site. Don't take this wrong, everyone is really sympathetic and careing on this site. But, I guess I'm looking for someone that actually feels "GOOD" again. "HELLO", anyone out there?
"LOL" judy-m

What they ARE designed to do is to reduce the number and intensity of exacerbations; to slow the progression of the disease. That is a VERY good thing, as each exacerbation, and particularly each intense or severe exacerbation, has the potential to be very damaging to your body, and cause all sorts of ugly disability.

So no, rebif will not give you any "relief of dizzy, light headed, pressure in the back of the head". But maybe (and there are no guarantees!) you won't experience as many flares, won't experience such major flares that they leave disability, maybe you'll manage to just get through the rest of your live with some dizziness, light headed-ness, pressure in the back of the head.

SOME folks have experienced some "good" feelings from taking one of these drugs. It may be a placebo effect: knowing that you're taking control of the course of the disease by injecting one of these meds might give you some positive psychological feelings, that will make you "feel good". Please understand that I am not discounting the placebo effect. It is very important, and if you happen to experience that, it's a very good thing.  But there are lots of meds that you can ask your doctor about that will treat symptoms (like the light headedness, etc.). Not all of them work for everyone, so you might need to experiment a bit (with your doctor's permission and observation) to find one that works well for you.

As for paying for the medicine: If you  have health insurance that pays for other prescription drugs, it should pay for the rebif (and you'd only have to pay the usual co-pay).  You need to talk with your insurance provider to make sure you set that up correctly.  If you don't have health insurance, or don't have prescription drug coverage, you can call the company that manufactures the rebif, and ask about their support program for people in your situation.

I'm on Betaseron, another interferon drug like rebif, and I have lots of positive things to say about it...but no, Betaseron did not have any effect on any of the symptoms or disability that I experience with MS; what it HAS done is greatly reduce the number and intensity of exacerbations...slowed the progression...of the disease.

I too am on Rebif, and i feel fantastic. I agree with Dawn in saying that i have nothing but positive things to say about Rebif. I was really down and i now am getting to feel as tho i feel a little bit like the old Lynn (i know that i never will be the same). You can check out the web site MS LIFE LINES . It is the rebif site. I read on there that the reason rebif DOES make you feel better is because, unlike the other CRAB drugs, has an antiinflammatory effect, hence making you feel a little better. Check it out on the web site. MS is an inflammatory process this is why rebif works so well i guess. I do the same thing as Dawn, the advil before i inject and i really have no side effects. I use the auto injector too, and i do it myself. It is very easy for me. I did get red welts at the injection site first however rarely now. I  also get muscle achiness the next day, however nothing really unbearable. I wish you all the luck and i hope everything goes well for you.

Best,

Lynn

judy-m said...
Thank to all for your input. I was diagnosed in 1982, 43 years old at the time. I am now 67.  No real permanent disabilities & went into remission for over 20 years. Went to a neurologist about a year ago for head pressure in the back of the head. He ordered an MRI. It showed 2 new lesions hear my spine. He is just insisting I have to get on Rebiff & says I should have been way before now. In the last month I have been experiencing dizziness & constant lightheadedness & occasional numbness in various areas.  I am so afraid of these powerful drugs b/c I am sensitive to medications. I don't know if I am in denial b/c I have no real disabilities yet. I know this drug therapy is to prevent any progression but with side effects I wonder what the trade off will be in my everyday life. I have decided to bite the bullet & start the Rebiff. Going into unknown territory is overwhelming to me. I am encouraged by the responses I have gotten. Do any of you fear the shot itself, like is it painful? With the med going just under the skin, I tended to think it would not be that painful. I normally am not scared of needles but then I have never had to take 3 shots a week for life!! Like I said, it is the "unknown"....thanks to all that replied here.....Judy M.

The needles used to inject rebif are the same size as those that are used by folks injecting insulin -- very small, short, and relatively painless.  Of course there will be some sting -- you're sticking a needle in yourself!- - but less of a problem than the longer needles used with Avonex. It's scary at first...but now, after doing it for so long, I can almost do it in my sleep.

Did the doctor give you any advice about what to do about the dizziness and lightheadedness? There are some meds that might help with that.

my entire body is in pain.  and when i feel presssure on the back of my head it means im going to throw up or that im overheated how you feel better