anyone have experience with rebif?

[QTPieRN433]

am anticipating a call from my neuro tomorrow and though technically the PA couldnt give me a diagnosis at my last appt cuz the doctor was not available I am about 99% sure of what he is going to say...He's already had me research the different DMD's and told me at my 1st appt he wanted them started right away though I never really got an "official" diagnosis. I am leaning towards rebif and thats the one they suggested for me..Does anyone out there have experience with this med..whats it like? what kind of side effects if any did you get? Did these side effects get better as time went on? did they dissapear completely after awhile? I am a full time nurse with no PTO hours to my name after this MS work-up and cannot miss any more work so i am most concerned as to whether or not these "Flu-like symptoms" are severe or tolerable..any advice is appreciated. thanks.

[QTPieRN433]

Thanks so much for sharing your experiences guys..I appreciate it. still sitting here waiting for the phone to ring and will let you know hopefully in less than hour what we decide..I am so frustrated with my neuro office as it is a big mega practice and noone ever calls me back and I cannot seem to speak with the same person twice there. :( But this is such a wonderful forum and so many helpful people willing to give advice. I love that! If anyone else has experiences feel free to comment..:)

[sllowe]

Hi there,

My experience with Rebif is quite similiar to MSmsinFL (belated hello to you MSms by the way!). I 2nd her suggestions. And can elaborate on some useful techniques I was taught before you begin if you like.

The Dr. may want to begin treatment w/out a definite MS diagnosis. That's a good thing! It is suggested to start DMDs early to maximize benefits. So, even clinically isolated syndrome (CIS) Dr. can begin course of treatment.

If it's any consolation to you, the night I began injecting, after the nurse left, I went to back-to-school night. All was fine. I took some advil, just for precaution. The flu-like symptoms are nothing comparible to a real bout of the flu. So, my vote is for tolerable. The titration packs alleviate maximum dose at one time, so over a few months you generally adjust.

Nice to meet you (you too MSms) - see you around soon,
-Shell

[Adnvwsti]

QTpie, thanks for asking this question, and MsMsinFl, thank you for giving the full response you gave.  My first neuro told me that he wanted me to research and select my own DMD, just like your neuro has told you, QTpie, so I'm thinking that's your dx, right there, although it would have been good of him if he'd shared his thoughts with you!  

My first neuro told me that he liked Rebif and BetaSeron best and he wanted me to start on one right away.  But we were moving and losing our health insurance, so the neuro referred me on to another neuro at our new location and told me to see him ASAP after moving and then begin the DMD immediately.  I saw the new neuro here two days after our arrival and he said he preferred Copaxone for his patients.  I had issues with the Copaxone because I have a long history of heart problems and  some of the side-effects of Copaxone can mimic a heart attack.  So the new neuro said he would research that and make a decision when he saw me again.  He wanted me back a month later.  But things haven't worked out for that.  My husband is still searching for work, we still have no health insurance, and I've rescheduled my appointment with the new neuro now over and over again as a result.  It's been five months and one relapse later and I'm still on no DMD.  BUT I am now scheduled to see the neuro later this month and after reading some of the threads here on the forum, I think I'm still leaning toward Rebif as my DMD of choice.  

MsmsinFL, your response has helped to cement my decision.  If the new neuro doesn't go along with my choice, I may change doctors.  QTPie, good luck with whatever DMD you choose!  Please share what side-effects you experience once you get started, too, and best wishes to you both.  

[MsmsinFl]

I've been on Rebif since Sept 2009.

So far, I've had no Sfx -- just an occasional mild "morning-after" headache.  I do get a small red place on my skin a couple of days after the shot, & it stays red for a couple of weeks (no pain or itching) -- it helps me keep track of the injection sites I've used.  
About 2 hrs after the shot the site area gets red & blotchy (you can see the cellulite distribution!) no pain, just showing the area the med has spread to (a good thing).  That lasts only an hour or two -- don't get worried.

I have had blood work done monthly, at my request, to stay on top of any liver issues.  Most neuros do at 3, 6, & 12 months, but I'm a worrier, so get it done more often.    So far so good.

I take 2 Advil & 1 benadryl before each shot, and an additional advil about an hour after.  Don't know if this is the reason I have no sfx, but I'll keep taking the pills!  I also apply a heating pad to the site before & after (to distribute the neds), and warm the syringe to body temp before injecting.

DO rotate the injection sites -- I'm thin, so I skip my arms.  FAT is your friend for choosing good sites -- always shoot into some fat.  And when you do your thighs, go high up and  towards the outside.  And while shots into the belly seem creepy, the belly & butt are easiet & painless.

Good luck with Rebif.  I was terrified of the flu-like sfx and liver issues, but so far it's all fine!