Beth,
I'm not on any DMD's or WMD (my wording). Copaxone nearly killed me.
I also decline Ty and Novantrone.

As I decline, my Neuro appt. is getting closer, I may need to make a decision.

Not now.

Talk to your Dr., these meds effect us all differently.

Thanks Cheryl. I didn't see your posting until later.

I didn't actually mean that Lauren was reckless or irresponsible (I appreciate that Lauren was just offering her amature opinion, just like me ). What I meant was that I felt Bethany's neuro was, for offering this option up so soon, and before other CRABs were tried.

Cherie

You are welcome. I think maybe we were posting at the same time.

I am not sure who Lauren was calling reckless and irresponsible but it came across as tho she was calling you that and not Bethany's neuro. If she was not, then I will take back my comment!

We may not have the whole story of Bethany's medical history, but we are all amateurs when it comes to offering medical advice. We can only offer our own advice based on our own experience.

As you and I both know, quoting stats just tends to fuel the fires and gets no one anywhere! Offering informational websites for someone to go to and read for themselves is the best way for them to learn!

I read it the same way you did, however, I thought perhaps Lauren misunderstood my comment about neuro biases, and retaliated against me personally.

What I didn't understand though is why I was accused of providing incorrect information, when Lauren only seemed to repeat what I said in my initial post. Or was I missing something?

Yep, statistics are only a number. The important part is what our various options are, the possible risks/personal side effects, and whether the drug works for us as an individual.

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!

Hey Bethany, better late than never...huh!

I am no longer on any of the MSMDs, but took my turn with Avonex and Copaxone. Notta results with either....kept right on progressing in disability.

I am also on LDN and have been for 4 years. In that four years I have not progressed any further in disability. Unfortunatel, I didn't start it untill I had already progressed to SPMS. I am just so thankful that LDN seems to have stopped my MS progression.

BTW Naltrexone is FDA approved...it has not been approved for MS, as so many meds we take are, also, not approved for MS. We are prescribed and use LDN off label so to speak, as are other drugs that were not created for MS but do help in the maintenence of our illness.

If Rebif is not doing the job for you, then "off with it's head" Copaxone may be worth a try or Tysabri-(Not special, just another MSMD).. I chose the cheaper, safer, more efficient, feel good Med (LDN) ...so sue me...LOL.

Whatever you decide, Bethany, I wish you much luck and good health.