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

Hi Bethany,

As you see there can be differing opinions about dealing with this disease and everyone has made very valid points and suggestions. If the side affects are causing more problems than the disease it might be time to try a different DMD.


I have never used the DMDs and have absolutely no desire to but I was dx'd 7 years before there were any drugs for MS. I am more interested in symptom management and that only temporarily if possible.

This disease is a crapshoot with or without meds.

MS is very individualized, what works for one patient/person will not work for someone else. You should discuss your concerns regarding Rebif and how it's making you feel with your doctor. If your doctor is any good at what he does he will be more than willing to discuss different options with you.

Quote:

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.

I believe that it is highly reckless and irresponsible to promote incorrect information Re: Tysabri, as the correct recommendation for Tysabri by the FDA is: "it is generally recommended for patients who have had an inadequate response to, or cannot tolerate, any of the other disease-modifying therapies". http://www.nationalmssociety.org/sit...ds_natalizumab

Also, Tysabri is being prescribed as a first line and/or second line defense against MS.

Quote:

Our Neuro's have biases, that are NOT necessarily based on anything concrete. All of the CRABs have equal efficacy

Again, this is incorrect as Tysabri and the ABCRs differ substantially in efficacy. See the proven data: "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

Considering that there are over 14,000 MS patients currently on Tysabri therapy, with 300 patients being added weekly (with some of us receiving outstanding results), there is a distinct possibility that their neurologists believe the proven data on Tysabri (including the submitted three-year safety data), and not the inaccurate postings of same on a message board.

Quote:

I'd certainly recommend giving that [LDN] a go before trying Tysabri

Bethany, FYI... LDN is not an FDA approved drug for MS and it requires a prescription that needs to be filled at a "compound" pharmacy. Therefore it is my suggestion that you discuss your options for effectively treating your active MS with your treating MS doctor.

Whatever your decision, I wish you only the best and a speedy recovery from your current symptomatology.

Have a great week everyone.

Lauren

Lauren

Whoa! What Cherie is saying is basically true. Some of our Neuro's DO have biases whether you chose to admit that or not. I recently attended a 2-day conference in Washington DC put on by the FDA/AHRQ and there were neuro's there who admitted they would not rx Tysabri because they felt it did not have a long enough track record and for no other reason. I personally have spoken to neuro's who will not rx it until it has been on the market for at least 5 years, maybe longer. Those biases are based on nothing concrete. You can cram all the data you want down their throats and they will not change their minds. Some doctors are just plain averse to change, period.

As for her comment that all CRABS have equal efficacy, a percent point one way or the other is a minor point and there is no need to argue that or make an issue of it. The stats are based on those who use the drug and not the entire MS Community. Anyone can skew stats. You know that as well as anyone.

The medication guide was recently changed on Tysabri, as recent as last week. It is still not recommended as a first line of defense drug and the insurance industry is not behind that theory. They may never be no matter how much you go around to every MS site and try to push it.

In my opinion, calling another member of an MS forum reckless and irresponsible is just not necessary.

There have been no head to head trials pitting Tysabri against any of the ABCRs so I am not sure where you get any of the rest of your information.

Cherie also did not say that LDN was an FDA approved therapy, she called it "non-mainstream." Anyone who has been around knows that it is not FDA approved and BTW it has to be filled by a "compounding" pharmacy.

She also recommended, as did everyone else, that she talk to her neuro about treatment.

Please also remember, Lauren, that Tysabri doesn't work for everyone. Even Biogen/Elan representatives have agreed on this fact. Maybe no therapy is the best way to treat some people with MS. That is for the patient and their doctor to decide.

Good luck Bethany! Research and educate! That's the best way to help yourself!

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