Still a bit confused as to what my neuro told me

[Melissa072]

Hi again,
Sorry to ramble on again, but I just want to verify what I was told of my neuro.
He told me there was a new drug either out or coming that he was going to put his patients on for ms.
He said this drug will stop up to 70% if not more of attacks.
He said this drug will stop people from going into secondary progressive ms.
He said the days of ending up in a wheelchair with ms does not happen anymore due to the drugs.
He said someone with ms will still be walking around when they are 80.
He said those who are in wheelchairs that have had ms for 20 odd years wouldn't be in wheelchairs today if they had the drugs.
I don't mean to sound arrogant but he makes ms out to be a play in the park.
He also said there will be a cure for ms within 20 years.
Is what he's told me correct??????????????  My husband has a friend with ms, he's 60 and walks unaided and you don't know he has anything wrong with him, another man who's 40 works here in the mines, he also has ms, but to look at him you wouldn't know, same as his sister, she also has ms but unless you knew you would think theres nothing wrong with her.
Is what my neuro told me correct, do the drugs stop up to 70% or more of the attacks??????????
Thanks everyone

[Quixotic1]

Yep, I just read the article.  As of now there have been two additional cases of PML an often fatal viral brain infection in Europe in two people who had been taking Tysabri for 14 months and for 17 months.  So, currently the infection rate is 2 people per 6000 taking it.  This is less than the "label warning" of 1 per 1000, but it really does dash the hope that the prior cases occurred because of the simultaneous use of other immune-modulating drugs.  Phooey.

Neither of those patients died, but PML often leaves significant neurologic damage - not exactly something we need.

Still, I will be watching ithis closely.  If I fail the DMDs, my two approved choices are Novantrone and Tysabri and I would still choose the Tysabri.

Quix

[shoshin]

There are apparently two new cases of people on Tysabri with progressive multifocal leukoencephalopathy (PML). See http://www.bloomberg.com/apps/news?pid=20601087&sid=ackheh59PkFY&refer=home

sho

[jensequitur]

Didn't they just find something else as a side effect of Tysabri?  Like a liver disorder or something?

[Quixotic1]

It does sound like your neuro is talking about Tysabri and as Jon said, there is no information AT ALL that it will prevent moving into secondary progressive disease.  We only have 2 years of experience with it.  It came, was used just for less than a year when there were three deaths in people on it.  It was removed from thr market, the 2 deaths in people with MS were when it was also being used with an Interferon.  It was recently (last fall, I think) re-approved for use in MS, but without additional meds that affect the immune system.  Currently, it must be given with the informed consent that in the little time it has been used there has been a fatal side effect in 1 per 1000 patients.  However, most people working with it, believe that we will see far fewer fatal brain infections than that with the new guidelines for its use.

My neurologist is one of the clinical researchers for Tysabri.  He thinks it is a great alternative when the disease does not respond to the ARBC meds, but is not as otpimistic as yours is, merely because we do not have enough data to justify those kinds of glowing and brash statements.

You have asked the same question twice.  Are we missing your real question?  What is it that you would really, really like us to answer?  My opinion about what your doc said about the current state of MS treatment is that his statements are not backed up by the current experience.  People are still moving into secondary progressive disease and are still ending up in wheelchairs.  But, I do share his optimism (and that is what it is, it is not knowledge) that we will see the cure to this disease in the next two decades.

At present, though, they still have not found the smoking gun of exactly what and how MS is triggered.

Approximately 12% of those poeple with Relapsing Remitting MS currently will live most of their lives with MS just naturally having a mild course to their disease.  But, even a good number of those will suffer some cognitive (but invisible to others) damage that can be called moderate to severe.  So, I very much disagree that we can at this point, rely on anyone's course of MS being truly "benign."

Quix, MD

[Melissa072]

Thanks guys............

Melissa

[JonM]

Only Tysabri has shown the abilty to cut relapses and lesions by 2/3s.  Tysabri is relatively new and is still has some issues.  In fact no one knows what it does after 2 years.

The more std. MS drugs, which are primarily interferons by the names of Avonex, Rebif and Betaseron cut MS activity by about 1/3.  And thats if you have Relapsing Remitting MS.

The drugs are all injected.  A new drug that is oral "finglomod" is in phase 3 clinical trials.  Still has about 2 years to go and is also suppose to cut the MS activity by about 2/3s.

As far as a walk in the park, I think your Neuro is painting a very positive picture for you, and depending on your experience, the drugs, etc,, may very well turm out that way!!!

Jon

[Tahiri_Veila]

I have heard that they prevent attacks and slow down the disease, but I have not heard a percentage.

You could very well still be walking 20 years from now with or without the drugs.  I don't know of any cure coming out soon, but who knows.  Hopefully more will reply.

Tahiri