MS research: 2018 ECTRIMS meeting highlights, summarized by the MSAA

[agate]

What's New in MS Research: Highlights from the 2018 ECTRIMS Annual Meeting (from the MSAA, November 29, 2018):Only registered and activated users can see links., Click Here To Register...

[Lazarus]

Good information.
I noticed the studies on biotin. Sounds like the use is similar to ampyra...designed to improve walking and monitored through 25’ w@lking tests as you take it. Good results.

Good results for safe long term use of rituxan for MS.

I am also paying attention to aubagio.

Thaat’s All I remember as I did not take notes. But the information Agate posted is easy to meander through. Thanks for posting it.

[agate]

I was struck by this (under "Tracking the Efficacy of Interferon Beta 1a for Up to 10 Years":

With many people with MS now on disease-modifying therapies (DMTs) for several years, there is an increasing focus on the long-term safety and effectiveness of those medications.

Researchers recently evaluated the ongoing efficacy of one of the first DMTs,
subcutaneous interferon beta-1a, in 1,240 individuals receiving care at four MS centers throughout Italy. [Totaro P912] (In the United States, subcutaneous interferon beta-1a is available as Rebif®.) The primary endpoint of their study was the proportion of patients with no evidence of disease activity (NEDA-3) as measured by clinical relapse, confirmed disability progression, and MRI for brain/spine lesions.

Seventy-one percent of the study participants were women, and the participants’ mean age at the start of treatment was 34.6 years. The patients were followed for an average of approximately 7.5 years. Seventy-four percent of patients remained on treatment at two-year follow-up, just under half were still on therapy at the 5-year mark, and 28 percent were on the medication after 10 years of follow-up.

At two years, 44 percent of patients did not have evidence of disease activity, while 25 percent were free of disease activity at five years and 19 percent were at 10 years. The researchers concluded that those percentages constitute “further evidence of sustained interferon beta-1a efficacy in modifying the natural course of MS.”

They're talking about Rebif here but I wonder if these results are typical of the other DMDs as well. It looks as if the longer you take Rebif, the less effective it is?

[stillstANNding]

I wouldn’t say it wears off, Agate. For some there was no evidence of disease at 10 years which is as long as the study. So for them it was not less effective.

ANN

[agate]

So maybe what we really need to know is what percentage of the people not taking Rebif showed no evidence of disease after 2 years/5 years/10 years?

Apparently that information isn't provided.

[Lazarus]

I thought they were talking about betaseron which was the first beta interferon on the market. I was in the first batch of people getting the drug. Remember, it was the very first MS drug on the market. I did take it for 8 or 9 years.

We only have a short statement about the study so I wouldn’t draw any further conclusions. I thought the numbers looked surprisingly good. One of those glass half empty/full things?

[agate]

I thought it was Betaseron too at first then took a closer look. Betaseron is interferon beta-1b, and Avonex and Rebif are interferon beta-1a.

The researchers interpreted the results in a positive way. I think you're right, Linda, about the half-empty or half-full glass.

[Lazarus]

I thought it was Betaseron too at first then took a closer look. Betaseron is interferon beta-1b, and Avonex and Rebif are interferon beta-1a.

The researchers interpreted the results in a positive way. I think you're right, Linda, about the half-empty or half-full glass.

Thanks. I took avonex too. And then copaxone so I guess I have all my bases covered. My favorite of all the meds I used was novantrone...a chemo used for cases of prostate cancer...(I know there are some jokes there).

Novantrone was stopped one infusion earlier than the 2 year limit that the government had imposed. They discovered it was more risky than they had originally thought. I have been on one major med or another for 25 years. And I am still hopping around!

[agate]

They don't seem to be using Novantrone much any more. When you say it was your favorite, does that mean that you liked it because it seemed more effective than the others? Or because taking it wasn't such a chore?

[Lazarus]

They don't seem to be using Novantrone much any more. When you say it was your favorite, does that mean that you liked it because it seemed more effective than the others? Or because taking it wasn't such a chore?

They pulled it for use as an MS drug because they discovered the risk of heart damage was significant. Even a few years after pulling it from use for MS they found the risk was worse than they originally thought.

I liked it because it gave me instant benefit. It was easy for me to use but the government only allowed people to get infusions for 2 years. I think I used it after the 8 years on IVIg which was also a significant drug for me. I stopped The I Ig because it became ineffective.

Glad I started rituxan. Rituxan and IVIg gave me no significant side effects (and most who take either one of them)