This Is MS Multiple Sclerosis Community: Knowledge & Support

Although I long for the day when I can pop a pill to treat my so called MS, what is the real benefit? I hate injections, so yes, this is a benefit, no more injections, but here are some things to think about:

1. MRI enhancing lesion reduction -- This doesn't correspond to disease activity, why do they insist on using this as a valid metric of effectiveness???

2. "The annualized relapse rate was reduced by at least 70% during the six-month extension study", so what??!! Six months doesn't say a whole lot, and I saw nothing through out the whole write up of improvement in EDSS.

3. Another point to consider is that a lot more people are being diagnosed with MS now, than before. This doesn't necessarily mean that MS is spreading, it means that they are quicker to diagnose so YOU can start treatment (which is convenient for the drug companies), and they use criteria such as MRI lesions, and LP protein, which could be inconclusive and not definite MS, so my point is, there are a lot of people that may be enrolling in these clinical studies (for FTY720 and others) that really don't have MS, or have VERY mild cases of MS, and it would skew the numbers in favor of the drugs effectiveness. SINCE they don't know what MS is, how can they treat it? It’s a shot in the dark.

Sorry for the cynacism, but drug companies don't use root-cause analysis with MS, they want to treat, and I think taking this medication, at least for most, will be in vein (besides the very strong placebo effect). It doesn't FIX anything, and given the time frame, its really isn't proven. Lets face it, time is not on our side, but unfortunately that is what tells the truth, so most of these drugs will need to proven by effectiveness over time. The only other way to tell if a drug is effective is a drug that will give back EDSS points, if you start healing, and sustain improvements, then I'll be convinced (I know in some cases the damage is beyond repair, unfortunately).

Brock

Sounds like you entered my brain and wrote down what I was thinking.

gwa

I'm glad someone feels the way I do about it... I really wish/hope that FTY720 is actually good, but something in my gut tells me its no more effective than any of the CRAPS (oops I mean CRABS) that they are peddling. I feel that they may be self-serving when it comes to the data that they choose to report on, and how they report it, ha, not to mention who they select for clinical trials based on special criteria (or filters).

Blah blah blah.. Sorry for the ranting.

Brock

oo

I have to agree on the way researchers are not looking at the whole picture. I know from Gary that the lesions don't matter is some people. Why do some have a brain that looks like screen wire and little disability and others have virtually no lesions and significant disabilitiy. But we can't SCREAM loud enough to get them looking in another direction. Frustrating ain't it!

Exactly, I echo both points. We aren't researchers, yet we can sit here and pretty much know that MRI is not a good diagnostic tool in MS. I think the drug companies and doctors struggle for something tangible in this practically invisible disease so that may be why they cling to it, they don't realize the profound effect it is going to have when focusing on MRI, when it obviously isn't a good metric to use in MS. I would say that Doctors have better intentions than the drug companies when it comes to MRI's also. Drug companies can usually make that inflammation on MRI go away, which essentially "sweeps under the rug" the underlying problems occuring in our CNS, it doesn't address and help to fix the problem. Coincidently their may be some VERY small amount of relief for the disease (in some cases), but this could be a placebo affect, or a lucky mode of action as a result of F*cking with the immune system. Just my 5 cents worth anyways .

Brock

Also called fingolimod....((the FTY720 that is )