I've had NOTHING but problems since beginning Rebif.

I wobbled a bit when walking before rebif, but now my balance is GONE and I have to hold on for dear life before taking a step! I KNOW this is not progression of the MS, but part of the rebif BS. I was back to my old semi-wobble and comfortable sleeping during my "No More Shots, D*mmit!!" protest a few weeks and stopped the shots for 3 weeks.

After ONE effing shot, it is ALL back... the spasticity (spelling??? Help!), the relentless RLS, my inability to walk to my bathroom without falling over...

My neuro and the MS specialist at Johns Hopkins said that rebif was the best treatment for me...but how in the h*ll do I function daily like this? The MS doc said I might be a candidate for tysabri (spell help again!??!! ), but I certainly DON'T want to start something new and be worse off than I am with the rebif!

In general, how do you weigh functioning competently today with keeping the ol' MS monster at bay?

Bethany

Bethany
I am so sorry you are going through such a rough patch. I wish I had some majic words to make you feel better. But unfortunately I only have my experiences to go on. I'm not a doctor and suggest you talk to yours.

My observations, first of all Rebif is not for symptom relief. It is for slowing the progression of the disease. A long term therapy. Personally I've been on it and a couple other and found the side effects more trouble then the possible benefits. I also think that it should not be making you worse.

Maybe you are having an exacerbation, flare-up, and the only thing I know of that "may" help is steroids, either IV or oral.

Please talk to your doctor. I feel your pain and frustration and want you to know you are not alone.

Bethany, this bites and there's no getting around it. I agree with Beth that you need to speak in no uncertain terms with your neuro about this.

If your function is altered by Rebif then you might just have to switch. But that is something that you and your neuro have to decide together.

I hope you feel better very soon!

Hi Bethany,

I'm so sorry that you're having to go through all these problems.

I've had 10 Tysabri infusions so far, and I'll take its superior efficacy of 67% over the ABCRs any day, plus it ease-of-use as an infusion every 28 days instead of those dang shots and their side effects.

My might suggest that you discuss Tysabri fully with your neurologist, and read all accurate data you can about it.

In comparing the ABCRs with Tysabri in efficacy when it comes to the reduction of relapses, see: "The relapse reduction rates used were: TYSABRI was 67%, Avonex (Interferon beta-1a IM) 32%, Betaseron(R) (Interferon beta-1b) 34%, Copaxone(R) (glatiramer acetate) 29%, and Rebif(R) (Interferon beta-1a SC) 32%."

TYSABRI® Shows Reduction in Steroid Use/Hospitalizations & ABCR Comparison
http://http://www.elan.com/News/full.asp?ID=913012

You can also read more accurate Tysabri data by going to the all volunteer non-sponsored website: http://www.mspatientsforchoice.org/

Whatever you decide Bethany, I wish you nothing but the very best.

Lauren

Bethany - it sounds to me like you are getting conflicting information from your MS doc and your neuro. They both need to be on the same page - and that would be the same page as you - when talking to you about treatment. Maybe you can do your own research before your next appt and then ask them some hard questions, starting with why they think Rebif is the best option when obviously it is making you feel so horrible!

A good place to start for information is the links at the top of the page here. And then you can get more information from the National MS Society's website where they compare the ABCRs, Tysabri, and Novantrone, the 5 top treatments for MS. (Novantrone being a chemo treatment). Here's the link:

http://www.nationalmssociety.org/sit...IVE_treatments

Each drug has their own website which you can go to from that link.

It's a tough decision and believe me, I've been there. I've been on Beta, Tysabri, and Copaxone. I am now in a clinical trial for Tovaxin because I got tired of my insurance company playing games with me trying to get approved for Tysabri. I failed Beta and couldn't tolerate Copaxone.

After over a year on nothing but steroid pulses, I applied for the Tovaxin clinical trial, I was accepted. So far, so good.

I am still an advocate for Tysabri as I believe it is a good drug for some people. It is not for everyone, as all drugs are not for everyone. There are some people who have failed it, just like those of us who have failed some of the ABCRs.

I testified in front of the FDA for the re-release of Tysabri, and just participated in a 2-day FDA conference representing the MS Community stressing the need for ease of accessibility and consistency in training regarding the TOUCH protocol for Tysabri.

I know, a lot of information! I wish you luck with your decision and sincerely hope that you get the care you deserve!

Hi Bethany,

If you were just struggling with the side-effects, or if Rebif just didn't seem to be slowing your attacks yet, I'd suggest you give it time (a year?) to see if things level off. However since you are convinced that you are struggling from side-effects, and it seems to be making you worse, I think it's time to become your own advocate with your neuro.

At this point in time, Tysabri is recommended for people who have failed at other proven and SAFER therapies. I am reluctantly impressed by it's track record (over this last year), but I think it is premature and irresponsible to recommend such a treatment to people who are new to treatment options.

Our Neuro's have biases, that are NOT necessarily based on anything concrete. All of the CRABs have equal efficacy, and if one doesn't work, it doesn't mean another won't. What about Copaxone or Betaseron, which are different drugs then Rebif? . . . There are still a few other mainstream options available to you.

I have opted out of the CRABs and Tysabri entirely over the last 16 yrs. I am on a non-mainstream option called LDN (Low Dose Naltrexone), and it has been amazing for me. I was very unwell for a few years before I got on it, and have reduced my disability and stayed very stable since starting on it 2 yrs ago. Again, this would not be my "recommended" course of action for a person who is new to trying MS treatment options, but I'd certainly recommend giving that a go before trying Tysabri (at this point in history).

I think your neuro needs to be nailed to the wall. Ask him why he thinks Rebif is better, and why he would not recommend another CRAB before Tysabri. That approach blows my mind!

Cherie

Lauren, according to your own attached link:

"Because Tysabri increases the risk of PML, it is generally recommended for patients who have had an inadequate response to, or cannot tolerate, any of the other disease-modifying therapies that are available for treating MS (see Precautions)."

Which is what I said, in effect, but just my own words:

Recommended = generally prescribed
Failed = inadequate response (or cannot tolerate)
SAFER = "because Tysabri increases the risk of PML"

So, according to your own data on the CRABs (which includes only the effect on relapse rates, not disease progression, BTW):

Avonex = 32%
Betaseron = 34%
Copaxone = 29%
Rebif = 32%

Based on that data, I still say that they have virtually equal efficacy, and the only notable difference is whether one of these 4 different drugs might work better for an idividual.

Bethany, I would still recommend you ask your Neuro "on what basis" he is recommending a switch to a (currently) much riskier drug, instead of trying you on one of the other existing drug options.

Cherie

Biogen has recently changed the wording on the Touch Pamphlet for Tysabri and it now reads:

other treatments for MS

Here's the link -

http://www.fda.gov/ohrms/dockets/ac/...n-Addendum.pdf

Bethany, maybe it is time to go back to those Drs. and have a talk about that Rebif. Maybe it isn't working. Maybe you are having a flare.

So my advice would be go on in the Doc and see what they advice.

(oh, and eat chocolate! )

Ya Know---
I do think that the chocolate is doing me more good than anything else!!

Lately I've been partial to combining the McD's $1 menu sweet tea (w/NO ice!!) and $1 menu chocolate chip cookies. Take them home for the middle of the night (better @ 2AM or later!). By then, the mostly sugar tea is nice & cold!! And there's LOTS to last through the night since I use my own ice!!

Thanks so much for all of the info, Cherie!
I'll print it all and read it slowly tonight with the spoils of my afternoon trip to the drive-thru!

Bethany