COPAX: Brain Atrophy, Shrinkage, Repair

[DiannaKw]

Is anyone here familiar with the somewhat recent studies that demonstrate copaxone significantly reduces brain atrophy and tissue loss, not to mention a reduction in theconversion of inflammatory lesions into black holes(possibly better repair)? What does/would this mean for cognitive dysfunction (concentration, learning, recall, memory)? Would this influence your choice of DMD?

[DiannaKw]

I thought you were just being festive, what with Easter coming up! But I like the symbolism of breaking out of your shell.

UPDATE: i spoke with my MS nurse today... i'll be starting on my DMD in early April.

[twopack]

You struck me particularly with these words:
"I'm just so tired of torturing myself with the uncertainty inherent to our disease. The only thing I feel I KNOW is that I need to start treatment, period."

So true - I believe the uncertainty of day to day living with MS is the biggest adjustment we are required to make.  I felt empowered once I began injecting my DMD.

As for the timing of decisions, I think William James said it best with these words, "When you have to make a choice and don't make it, that is in itself a choice."

One more thing.  I love your little piglet avetar.  It has inspired me to return to my original chick in an egg.  I chose it in the beginning because I was a new chick around here.  Now it seems more about how tough it is to break through my shell.

So, welcome to our community and I'm looking forward to your updates.
Mary

[DiannaKw]

I appreciate the discussion were having here immensely - I find it as reassuring as it could be and I can't thank everyone here enough.  I think at this point I'll stick with the choice i made originally (Copaxone) and see how that goes... I'm just so tired of torturing myself with the uncertainty inherent to our disease. The only thing I feel I KNOW is that I need to start treatment, period.

I'll be starting in the very near future (waiting for coverage to go through, red tape) and I'll keep everyone here updated with the progress. Again, thank you thank you thank you!

Dianna

[twopack]

Thanks for inspiring this discussion Dianna.  I love spirited debate where people are trying to help one another instead of simply out to prove their own point of view.

I'm going to take this opportunity though to advise everyone to CHECK THE DATE ON ALL RESEARCH OR RECOMMENDATIONS YOU REVIEW.  MS researchers and specialists change their minds frequently these days.  NOT EVERYTHING YOU READ ON THE INTERNET IS CURRENT OR ACCURATE.  NOT EVERYTHING THAT LOOKS LIKE A STUDY ACTUALLY IS A STUDY.

Just in case it was missed, the research Diana referenced talked about TREATMENT NAÏVE PATIENTS.  When used in this context, treatment naïve means these research subjects have NEVER used any of the disease modifiers.  The research group they were randomly placed in determined their initial contact with any DMD.  This can make a real difference in research outcome.  And, those of us who have been treated can’t assume these results apply to us equally.

Now, it appears one link to this research shows a “publication” date of October 12, 2011.  I wondered about the 1:12am release time so went to the next link.  That one appears to be the same info but it is listed as a “press release” and dated April 17, 2008.  Scrolling down you can see this info is somehow connected with the manufacturer/distributor of Copaxone.  Doesn’t mean it’s false - just probably a little slanted - AND there are lots of disclaimers at the end.  

I don’t know the exact dates of this research.  I’m not familiar with either of the sites it appeared on.  Copaxone presently continues to be my personal DMD of choice.  I’m just saying that we can share personal experience here and with other web based contacts but should stick to official research sites and releases (yes, for some of those you have to pay for access) to be sure the information we use for important decisions is as ACCURATE and CURRENT as possible.  Peer to peer is VERY useful but NOT always accurate or current.

You have gathered a lot of good info Dianna between your own research and what others have brought here.  I favor Jane's take myself but (as many have pointed out) these decisions - however limited at present - are very individual in nature.

I think you can wiggle yourself out of that tight spot - the
          Rock>>Dianna<one - if you keep in mind that this isn't a forever decision about making the perfect choice.  There is NO PERFECT DMD for any of us.  Choose the one you believe can do the job you need done NOW and that YOU are most likely to COMPLY with NOW.  

The thing that seems to be tripping you up is your youth and the number of years you have ahead to live big while relying on drug mediated modification of the MS disease process.  That IS important.  HOWEVER, (important distinction coming) your YOUTH IS actually IN YOUR FAVOR in today's MS research world.  

There truly are NEW developments coming.  Older members will probably see them.  I suspect only younger members will get a real chance to reap big benefits. Oral treatments will be wonderful.  See if you can imagine treatments with the potential to RE-myelinate rather than simply slow the pace of destruction.  That’s improvement - a HUGE step forward for PwMS both figuratively and in the reality of mobility.

Whatever comes our way, PwMS (at present) make educated guesses about treatment options.  Like Jane, I wish the docs worked with us as a team member.  I don't want them to make all my decisions but I don't want to have to become a medical researcher either.  Sadly, reality seldom lands anywhere near the middle of that spectrum.

Make the best decision you can FOR YOU to use now.  You will likely use more than one DMD along the line anyway.  Perhaps researchers will create a day when you don’t need any DMD at all!  NOTHING seals you into a specific treatment forever.  In addition, all the DMDs can be enhanced by upgrading diet and choosing healthy life practices that work to preserve and strengthen nervous system health.

Sending good thoughts your way as you decide exactly which tool to lift against this foe.
Mary

[shoshin]

My impression is that all of the studies on the CRAB drugs have methodological weaknesses, such as the open label status that Lulu mentioned, patients lost to follow up and the difficulty of accounting for differences between the patients who stayed on the drugs and those who didn't. The other thing to keep in mind is that all these studies were conducted by the drug companies. It would be interesting to know who published the chart in the neuro's office.

As Jane mentioned, you as an individual may do better on one drug than another. Many researchers think that the general results for the DMDs hide the fact that some people respond better to a given drug and some don't respond at all. Unfortunately, because the results are not so easy to see in an individual even if the drug works and they don't have any biomarkers, it's usually hard to know which category you fall into. However, if one drug doesn't seem to be working, even a switch to another CRAB drug is often helpful: http://multiple-sclerosis-research.blogspot.com/2012/02/treatment-swicth-for-suboptimal.html

So as others have said, you basically have to take into account the information you can and your personal preferences and just pick something. The availability of newer, more effective but potentially more dangerous DMDs only complicates the situation.

I've posted this before, but I think it's telling. The neuro George Schumacher once said, "When somebody finds an effective treatment for MS, you’ll know it without the need for sophisticated statistical calculations." -- http://content.karger.com/produktedb/produkte.asp?typ=pdf&file=000151525

sho

[Lulu54]

In 2010, TEVA released the results of their ongoing 15 year study of Copaxone users with an average time of MS about 22 yrs.,  and the results were very good.  The slowing of progression with the use of copaxone has been proven through some rigorous testing.

I found this back from 2010 when I wrote here on this forum  -

"After 15 years, 80% of all patients on copaxone were still walking unaided.  Around 2/3 of the people in the trial have not progressed to SPMS, which is pretty much considered a given for the next step of this disease.  They also showed that the EDSS numbers remained stable and in many cases improved for these people on copaxone.

It is pretty much agreed that it can take 6 months or so before the DMD's gain control in our bodies and begin to work.  

The other DMD's also post significant results.  Until we know the cause of MS, these drugs offer us the best shot, no pun intended.If one doesn't work for your body, please consider trying something different.  "

The down side of this study is it was an open-label study and nothing to compare against.  Still, the numbers speak loudly to the importance of treatment.