Rebif..?!?!?! how the $&@! Do i know if its working??

[myshoeisonfire]

so I started rebif.. finally got a neuro that decided to pay attention to me..

hes AWESOME..
and started me on rebif..

i just took my 6th injection.. (the last 8.8 mcg one )
22 mcg are next

BUT anyone else that has taken this stuff, what did you notice? or how did you decide it was "working"?

I have a weird "feeling" in my legs, and right arm now that doesn't seem to be going away..
is it nerves "waking up" or is it my body's interpertaion on "muscle aches"

I am unable to talk at all, and use a wheelchair full time..
i cant seem to find any info about how soon rebif does anything after starting it, or how anyone even knows it working!

obviously i understand its prob not going to reverse anything... but keeping things from progressing would be nice...

TELL ME YOUR STORY!!!

cya!

-Dan

[ArleneMES]

I have been on Rebif for almost five years. To me, the side effects are very minimal. I do have days where I feel sluggish and have no energy. I have trouble on my right side; right leg, hand, etc. I rotate my injection sites from my abdomen to my hip area bilaterally. I discontinued the injections on my legs and the backs of my upper arms because too many people were questioning me about what looked to be large red bee sting spots or what looked like bruising. I certainly do not want every single person I come in contact with to know I have MS.

[myshoeisonfire]

Its weird.. I noticed my muscle spasms in arms and legs are worse today... but I still feel "decent" lol if that makes any sense!!

[myshoeisonfire]

I just started the 22mcg dose yesterday... suprisingly I don't feel like crap today!!! So far the next day has always been sluggish and felt lethargic....
I think I might head over to the pool today!!

[Needhelp16]

I was on Rebif, but only for a few months.  Last week my neuro took me off of it, because it really messed with my head.  I had uncontrollable anxiety and depression.  I've been off of it for 1 week and I can already tell a HUGE difference in my moods.

With only being on it for a couple of months, I don't think it really had an opportunity to do it's job.  So for me, there's no way to know.

I strongly urge you to contact your neuro if your mental stability changes at all.  The problems for me didn't start until I starting taking the full 44mcg dose.

I hope you have success with it, because switching meds is not a fun process! Good luck!

Laura

[sllowe]

Hi there,

No, wasn't numbness. I should clarify - I could "physically" walk. But, not properly. I could not stay 'straight.' Had to keep correcting myself to the left because I would just, well, go right. It was weird, I can't even describe it well.

The walking took months and improvement was a super slow process.
I could also talk, but what would happen is I would get a sensation and if I tried to speak during that sensation, all was slurred.

Also during that sensation I would lose the ability to react. So, for example, if I was chewing, I couldn't finish. If I were cooking and reaching, I just couldn't make the movement. If I were writing, I couldn't make my hand move that pencil. It was literally everything.
The sensations would last for seconds all througout the day. After months, the sensations became further apart, and abilities started to improve. Also had no ability to do anything requiring fine motor skills. i.e., clasping jewlery.
Hope this helps,
-shell

[myshoeisonfire]

When you say you're walking and talking again now... how long did that take? And what was process like? How did you know you could walk? Or did your muscles just start responding again?
Or was it that numbmess kept you from doing it?

[bshopp]

Unfortunately, I don't think Rebif works in a way that you can really see/feel the effects of quickly.  It's not a drug that you take to feel better.  It’s more a drug you take to keep from feeling worse.  If your relapses slow/stop down, and your MRIs don't show new lesions, you can assume it’s working, but I don’t think you’ll ever feel it ‘kick in.’

I've been on it for about a year, and it seems to be working well for me.  I was diagnosed last year when I lost partial vision in both eyes and went from zero to one to multiple lesions in the span of three months.  I just had a follow up MRI a few weeks ago, and there are no new lesions.  My sight is also back to 100%.  Considering how quickly the lesions appear to have been forming, I really believe it was the Rebif that stopped/slowed them down.

Good luck with your treatment!  I know the shots can be a pain and make you feel kind of crummy, but stick with it.  The side effects do eventually get better, and they’re totally worth the chance of slowing down the disease.

-B

[sllowe]

MyShoeDan!

Heeeey there! Well, I cannot say I've felt it working, but I can say that I don't have major relapses. I've been on Rebif since 07. I stopped taking it more than once - one time because of an allergic reaction that was not due to Rebif, but not knowing, I stopped that too.
Once due to low wbc count, and then more recently just plain old non-compliance. But, even with those few stops, I've been on it more than off for 5 years.

I do believe it works. Some of those things you are feeling, I felt too. Since I was new to MS, I did not know what was a side affect of the med, and what was my MS. I believe now some of those experiences were a combo of both.

I can talk and walk properly now. Something I wish for you :)

Thanks for joining us, and hope to see you around.
-Shell

[myshoeisonfire]

yeaaaaaaa i know... lol i thought i was having a stroke after i started this stuff!! i had suddenly gotten SUPER dizzy and had reaaly blurry vision and my right side got really weak....  they carted me off to the ER, and ruled that out... so im happy thats not what it was!!

called the rebif nurse line and they said tey hadnt heard that side effect before.. BUT they do know that when starting this stuff your body can kinda freak out.. andthey said i might get symptoms back i havent had in years...

so fine! *pouts* ill be patient!!!

the guys at ER told me to always come in if i have weird symptoms like that.. never assume its a false alarm!

they said they have "regular" people with MS that come in to make sure of things...

im still trying to get used to this rollercoaster ride!!!

now that my hands and arms have started getting in on the action, and getting weak on me, im suddenly a LOT more motivated to get things done!! (not like i wasnt before..) but yea..

have Tourettes Syndrome
Epilepsy
Spine issues / compression
and now MS

YAY!!!

[maxthecat43]

Patience is going to be key here.  As Lulu says, it can takes a while to really help, and even then we can't expect any med to completely prevent progression.  The best we can hope for is a reduction in relapses.  If you've only been taking Rebif for a short time, it is probably not fully effective yet.

If the symptoms you're experiencing are new to you, and they have continued for a couple of days- you need to call your neurologist.  You may need another round of steroids, if the symptoms are severe.  If they are more mild, it might be better to just ride them out.  If you have had one recently ( a relapse), these symptoms may still be remnants of the last one (if they are within the last 30 days of the previous relapse.)  

Either way, the situation is very understandably frustrating.  
Hang in there, okay?
Tammy

[Lulu54]

Dan, sorry but I have no experience with Rebif and I hope someone here who does will come along  soon and pitch in with their experiences.  I know on copaxone it can take up to six months for the immune system to be retrained but the interferons are a totally different type of drug mechanism and I think they start working in a couple months.

You already know that they don't reverse our MS, that's a hard concept to get.

I hope you'll stick around and learn more about this MiSerable disease.
best, Lulu