Rebif

[cydney27]

Is anyone currently taking Rebif? And does anyone know anything about it? I was just (finally) diagnosed with MS, though my Neuro wouln't say which kind it was... and is planning on putting me on Rebif. It's been 2 years since my symptoms started, and haven't had any kind of relapse or relief in any symptoms, they just keep coming. In the info that I have read on the drug, it says it's only for RRMS, but my neuro says he puts all of his MS paatients on it, and he is an MS specialist, or so his credentials say...Any info would be helpful, Thanks!

[healursoul]

I was on rebif.. and it felt like acid going into my body.. so bad things happened to me on it.. But I'm sure everyone is different..I am on betaseron now .. and I love it.. I haven't had a flare up in over a year!!!... so check into that one too!!..healursoul..xx

[cydney27]

HI there,
I am just finishing up my first montrh on Rebif.  So far the side effects haven't been too bad, headaches, fever and chills, but I have managed to sleep through nost of them.  the really bad one is the muscle ache that I have the next day, though I am working through that, and hopefully it will diminish with time. No site reaction, and I am amazed at that, for I have multiple skin allergies...go figure.

My friends seem to think that the Rebif is going to miraculously cure me. I have tried to explain to them, what the neuro and the MS nurse told me, but I guess they are just hoping to get the "old me" back. I just keep telling them "She's in there somewhere!! LOL.

Keeping my chin up and going for liver enzyme test later this month. Keep fingers crossed!!

Cyd

[msjinx]

hi cydney im also on rebif ..... i have rrms , my doctor thinks its working so far , just see how it goes , the headache's are bad but they do get easier to live with ..let me know how your keeping ?

[bellaf]

Hi,

I have been on Rebif for 6yrs now and i highly recommend it. The needle is small and it is just under the skin rather than a muscle needle like avonex. For this reason you can do the needle yourself easily and use an autoject which makes it easier and less scary. I do my needle on mon, wed, fridays and have the weekend needle free. At first i had flu like symptoms but if you take panadol one hour before the needle these symptoms dont happen. I occasionally got headaches but with panadol once again before the needle seemed to stop this happening. The only other problem i had was injection site reactions, just make sure you change around where you are doing the needle. Dont inject in the same spot for at least 2 weeks. I have tolerated Rebif very well and have gotten used to it over the years. It has been proven to slow down my MS and i have not had a serious relaspe since beginning the medication. I have recently gone off Rebif to plan for a baby but intend on going straight back on it after i have a baby. If you have any questions dont hesitate to ask me. Good luck :)

[sllowe]

Hi Cyd,

My name is Shelly, and I'm on Rebif. Most the DMDs are primarily for RRMS.  What you describe by having symptoms and how they never really go away is very similiar to most of us here.  We have often joked about "hey, when the heck is the remitting going to happen!" I'm not feeling any remitting going on here! So, as you'll see you are in good company here.  

Since this guy is an MS specialist, I'm surprised he did not treat you with DMDs 2 yrs ago w/the single attack which would be called CIS, he must of had his reasons, but not matter, here you are now, researching the meds, and I'm so glad you found us!

I will tell you about my experience with Rebif.  The injection itself is very doable. It's a tiny thin needle that is very sharp so you barely feel it.  It is administered SQ (sub cultaneous). It's not very painful at all and the site reactions are minimal. I do get about a silver dollar sized redish discolored mark afterward, but lately, even those are very light.  The flu-like symptoms that you will hear about do happen, however, I have to say that the titration pack they start you out with really helps to prevent (my belief) major flu-like symptoms.  They start you out with a very low dose (8.8mgs) and gradually work you up to the full 44mgs.

It was not all that bad for me, though as I'm sure you are aware, people have different reactions to meds all the time. Good thing is if you get the flu-like symptoms early on, they do start to diminish. There are other things that you should know about interferons though.  They can cause mood changes. It's something to keep on the look out for and recognize right away.  I did have times my mood was in the dumps, that is for sure. It did lift though and I didn't need to go on anything.

Please don't let any information you read or even what I've gone through scare you off though.  

How are you feeling besides wanting to know more about the meds, Cyd?  Are you ok with the diagnosis? You ready to hit this MS head on, or what? Would like to have an idea as to how you are taking all of this.  It's a lot when you are symptomatic all the time.

Welcome - Welcome!
Hope to see you around soon - ask anything - k?
Shelly

[essdipity]

Don't worry about saying 'finally" you got a diagnosis. Virtually everyone here knows just what you mean.

I see why you're confused about the med your doctor wants to put you on. Yes, it's for RRMS. Possibly your doctor sees a relapsing pattern that you don't. Please ask him about this. Or possibly he is calling it RRMS because that way your insurance will cooperate and pay for the Rebif.

I think you're better off either way, because sad to say, there are no meds for PPMS. So no harm in trying what IS available for you.

Best of luck, and keep us posted.

ess

[cydney27]

Thanks Doni, I have been lurking around on this site for quite awhile now, and have had nearly every symptom that has been discussed or questioned about, but couldn't get an MS diagnosis because I only had one lesion on my spinal cord between C3 and C4. Neuro says you can't call it "Multipl" if there is only one... Finally, and I know this would sound terrible to most people without these problems, I got a diagnosis ( more lesions showed up). So, we will now wait for the medication and see whqat happens. Thanks again!

Cyd

[doni54]

Hi, I'm undx so can't help you much with this question, but I know that Shelly, one of the community leaders uses Rebif, she will be on here sometime today and she can give you her personal experiences with this one particular DMD.  There are also others who will jump in here and share their experiences with Rebif.

I'm glad that you are with us and hope that you will stay around more so that you can have the support you need to get through some of this.  We're all here to help when we can.

Good luck with which ever DMD you choose.  Maybe it will work quickly to slow down your progression and give you some relief from your symptoms.

doni