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Old 06-16-2008, 11:07 AM #11
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Originally Posted by lady_express_44 View Post
I'm of the school of thought . . . "whatever works".
Ms Trial Lady . . . always looking for her next fix. Thanks for keeping on top of that information. I'm always looking for something that might be more agreeable too, then what we currently have available. I'm glad so many of us can take the drugs we have though, in the meantime.

Cherie
YES!!! whatever works!! I've been on betaseron since 11/2000 and have not had a relapse, so it works for me, and my disability reading went from initial 3.5 to zero a couple of years ago, so that's very nice! I tried to convince my neuro that I could go off it for a while, but he didn't buy it!

appreciate Ms Trial Lady posting this, and it sure would be nice to have a pill to take... get off the needle. dang I don't like shots!
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first flare 7/22/2000
Dx 8/3/2000 RRMS-- no relapses since
Betaseron 11/15/2000
Didn't miss a single injection the first 8 years. Now take about 6 shots off a year
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Old 06-16-2008, 11:20 AM #12
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I have been on C for a couple of years now. Whether it is the C or just my disease course, my relapse rate has decreased from its 6 +/- week rate to only 2 in the past year and 1 questionable one.

I started C at the recommendation from my brother who spent 20+ years in the neurological research field. At the time, I don't remember his reasoning, he talked to me about all the findings, research, side effects, etc of all the DMDs. That is partially how I ended up on C. My neuro was his boss and they wanted me in a clinical trial. To be in the trial, I had to be on C. So I went for it.

Cherie - Thanks for all the information you shared.
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Old 06-16-2008, 02:53 PM #13
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I think it is really quite common that many of us turn a corner at 20 yrs actually. They say that 50% of those with RRMS will be SPMS at the 10 yr mark, and 90% of us at the 20 yr mark. Mind you, this is old statistics (pre-DMT's), so perhaps things will shift in the coming years.
I really wonder if and hope there will be a shift as the DMDs get older but won't be holding my breath. Always the optimist, ya know.

If someone were to use my case in the first 2 years on meds, Copaxone would be considered the nectar of the Gods. I'm more than happy to give it all the credit but I'd rather wait until the fat lady sings, 20 years from now, before feeling too victorious.

I did have a dear friend say to me recently "yeah well in 20 years a lot of us could be in the crapper so don't think you are all that special". Dang, how is that for loving supportive friends?
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Old 06-16-2008, 03:22 PM #14
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Thanks for the info Cherie!

I know from personal experience that both Rebif and Tysabri work quite well. I had improvements on each of them. But I feel a heck of a lot better on Tysabri!

If it hadn't been for the terrible depression I had with the Rebif, I'd likely still be on it!
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RRMS DX 01/28/03 Started Copaxone again on 12/09/09
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Old 06-18-2008, 08:02 AM #15
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I cant take the interferons so I am on Copaxone. I fried my liver with Betaseron, and boy was I angry!

July 10th is my MRI and they are going to tell me whether or not Copaxone is working for me. Last MRI had new lesions, and I have had some relapses since starting it.

Copaxone does take a LONG time to start working. 6 months minimum, and 22 months maximum. I am 11 months into it now. I have my fingers crossed.
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Old 06-18-2008, 06:40 PM #16
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Quote:
Originally Posted by lady_express_44 View Post
Efficacy of disease-modifying therapies in relapsing remitting multiple sclerosis: a systematic comparison.


Freedman MS, Hughes B, Mikol DD, Bennett R, Cuffel B, Divan V, LaVallee N, Al-Sabbagh A.
Department of Medicine (Neurology), University of Ottawa, Ottawa, Ontario, Canada. mfreedman@ottawahospital.on.ca

The treatment of relapsing-remitting multiple sclerosis (RRMS) has become more effective over the last decade with the advent of the currently available disease-modifying therapies (DMTs). Pivotal clinical studies differ in many characteristics, such that cross-comparisons of relative risk reductions are of limited value and can be misleading.

Our objective was to compare the clinical efficacy of currently approved first-line DMTs in patients with RRMS, applying an evidence-based medicine approach. We reviewed all phase III pivotal trials of DMTs. Six clinical trials of Avonex, Betaseron, Copaxone, Rebif and Tysabri in patients with RRMS were identified for analysis. Only randomized, placebo-controlled, double-blind studies were included. The clinical efficacy endpoints compared were: proportion of relapse-free patients at 1 and 2 years; annualized relapse rate at 2 years; proportion of progression-free patients at 2 years, and proportion of patients free of gadolinium-enhancing lesions at 1 year or 9 months.

Based on these analyses, Betaseron, Rebif, and Tysabri show comparable effects, whereas for several endpoints Avonex or Copaxone did not significantly differ from placebo. In the absence of head-to-head studies for all products used to treat RRMS, it still may be possible to compare treatment effects by applying evidence-based medicine principles. (c) 2008 S. Karger AG, Basel.

PMID: 18437041 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/pubmed/18437041

Cherie
Congratulations. I'm like that guy (the alcoholic) in Independence Day - "I've been telling you for ten long years..."

When beta 1B got approved (betaseron) it was like - why??? Results were basically in line with placebo affect. Then they approved beta 1a (huh?) - avonex and rebif. Then COPII (copaxone). The MS community (at least those on the internet at the time in 1993) were shocked.

Nothing really worked. Ted Yednock's work with monoclonal antibodies seemed to be the only promising thing at the time but all these drugs were getting approved. We were all flabbergasted. Why?

I did enter the Betaseron lottery in 1993 - drew such a high number that I had a 15 month wait. Results from the trials didn't improve so I elected not to take a DMD.

Personal opinion - I've had MS for over 20 years and haven't taken a DMD. I still work/live/play a normal life. This disease is a crap shoot... Ain't no drug gonna help ya. Just bankrupt ya.

Tom
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