Rebif, Any "GOOD" reports?

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judy-m
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 5/21/2007 5:33 AM (GMT -7)   
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

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/21/2007 7:55 AM (GMT -7)   
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
If you are expecting rebif -- or Avonex, Betaseron, or Copaxone, to "make you feel good" again...your expectations are misplaced. NONE of these drugs are designed to treat symptoms (to make you feel good again).
 
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 am not a doctor, nor health professional, and don't pretend to be one, here.....


dopey_adfs
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 5/21/2007 11:06 AM (GMT -7)   
Dear Judy-M,

I have actually been on Rebif since December of 2002. I have had the side effects of the beginning with flu like, cold chills, etc. But once my body got used to the meds, I was fine. I went to a doctors meeting here at the hospital where they were discussing ms and rebif. The statics is overwhelming against all other treatments. That made my mind up for me.
I have learned to remove the shot from the frig about two to three hours so it can get room temp. I take two ibuprofen thirty minutes before hand. And I go to sleep (get relaxed), my mother who is my caregiver will wait until I am asleep and shoot me. I do not have injection sites (Only when I do the shot myself do I get them on my legs.) And I use the injector that comes with the Rebif. They have a hotline where a Rebif nurse will call at least once a quarter to check on you. If you have questions call them. Someone will come to the house to show you have to inject using the autoinjector. I have nothing but good things to say about the Rebif!!!! You do have to have blood work ~six months to check your liver enzymes. Mine has always been great!! My doctor is amazed whenever he sees me. I do have my bad days (weeks) but nothing that keeps me down. My lesions have gone from nine active to none.(there are eleven lesions there but not active) I thank God for that.
I will tell you like a friend told me. You have to find what works for you. You can be as proactive as you want to be.
I believe my treatment is working for me. A WHOLE OF GOD, support from friends and family, exercise, Lexapro, Provigil and Rebif!!!

Good luck. If you decide there will be a period of adjustment (22mcg for about a month) then step up to the 44 mcg (full dose)
Also I have excellent insurance!! Another God thing in my life...My insurance pays ~$2200 a month and I ONLY PAY $50 a month for the Rebif. I have Blue Cross/Blue Shield of Alabama. Call your pharmacist and get them to do a dumb run on your insurance.

With God's grace
Dawn

Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 5/21/2007 2:58 PM (GMT -7)   
Hi Judy,
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
Dx Dec 06, Rebif,44mcgs 3 x wk, Baclofen


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/21/2007 6:03 PM (GMT -7)   
All of the interferons -- rebif is an interferon--have some antiinfammatory effect. If you only read the rebif drug pages, they'll convince you theirs is the best. All the others try to convince y ou that THEIRS is the best. Actually they're all about the same...just a different mode of delivery, and some benefit to more frequent injections with rebif than with, say, Avonex.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


judy-m
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 5/22/2007 8:33 AM (GMT -7)   
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.

dopey_adfs
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 5/22/2007 8:53 AM (GMT -7)   
Judy,

The key is to relax and not be tense when you take the shot. I don't even use ice on the site before or after. Just let the shot get room temp take a deep breathe and administrator. Find a spot in your house that is a peaceful place that you can reserve for that task. Gently rub the site afterwards for a few minutes. It may be a little sting but not bad. The only thing is just getting over the nerviness of giving yourself a shot. I jokingly tell people that God has a sense of humor. I have always dreaded taking shots now I take them three times a week.

God bless you Judy

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/22/2007 8:58 AM (GMT -7)   
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.
Given your age...and the fact that you've gone for so long without any major symptoms or disability, I can very much appreciate your concern about going on rebif!  I was diagnosed in 1983, and am now 60, but I was hit early and hard by MS, and so finally getting on Betaseron about 13 years ago was very important to me.  If I were in your shoes, I don't know what I'd do now, if a doctor was telling me about rebif. With relatively little disability, and at age 67..I might decide to let well enough alone...
 
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.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


judy-m
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 5/23/2007 7:23 AM (GMT -7)   
Do any of you have an upset stomach a lot and variating in intensity from on set to on set. I don't know if this goes along with the dizziness & lightheadedness or what or if this is from anxiety which I have a lot of in the past year. Any responses appreciated....judy m

jconfusion
New Member


Date Joined May 2011
Total Posts : 4
   Posted 5/12/2011 7:28 AM (GMT -7)   
judy- i get the back of the head pressure but i thought it was my sinuses and you can ask your local department of  Human services to sign for the adult waiver program and the offer medicaid and im assuming youre disabled and get ssi they offer medicare bbut the tricky part is you need to request for them to pay the monthly premium which untilthey do youllbe footing the bill
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
 

jconfusion
New Member


Date Joined May 2011
Total Posts : 4
   Posted 5/12/2011 7:37 AM (GMT -7)   
and the way deal with the shot is to but and ice pack for several moments test it first with a pen the main goal for me is to not jump because the guns are loud its surprising like a bee sting but if you freeze the area first
its not that bad. i dont care about the side affects to rebiff, last year i couldnt walk now i can kinda have celebrate all victories no matter how small because i can walk again
jen

diamondreo90
New Member


Date Joined Sep 2011
Total Posts : 11
   Posted 9/25/2011 1:10 AM (GMT -7)   
I took rebif for about a year and no luck and the fatigue,tiredness and flu-like symptoms did me in.
The only thing you need to remember is that all MS cases,symtoms and treatment reactions are different.
This is a very random disease and affects everyone differently.
Try it and if there's no luck...Next!! try something else.
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