My Neuro's Opinion about DMD's..

[Heather3418]

When I had a Neurology appointment the other day, my Neuro and I discussed Copaxone's efficacy verses the Interferons.  She told me that it was once thought that persons with mild MS disease, were all placed on Copaxone.  She said that a study was done, paid for by the makers of Rebif, to determine if Rebif or Avonex were better at treating MS than Copaxone.

At the end of this trial, it was determined that Copaxone was just as effective as preventing more lesions and brain volume loss, as the Interferons, Rebif and Avonex.  (Please note that this is what I was told by my Neuro.  I did not determine from our discussion, where I could verify this information.  I just trust her.)

I had concerns whether Copaxone was "strong" enough as compared to the Interferons.  I wondered if Copaxone was enough for me.  Although there has been news that there are some DMD's that may still help those that no longer have a Relapsing/Remitting Course of MS, I do not think this was part of the study done by Rebif.

Although I have entered into a stage where relapses and remissions are less distinct, she assures me that Copaxone is keeping my disability level from increasing.  Thirteen years after diagnosis, I still walk without assistance, even though I use walls and furniture to frequently keep my balance.  A wheelchair may not be in my future, but it does look like a cane or walker may need to be used, somewhere down the road.  Maybe not due to MS at all.  My spine doesn't look very healthy on MRI.  I may be getting "old ladies" disease.....

I felt confronted by what my Neuro told me.  I am sure that other Neurologists and even members of this Forum will voice their own opinions.  That's what this Forum is for though.....to share information from all sources, with each other.  We learn that way.

One thought to leave you with. Despite the day we finally get a diagnosis of MS, it's not known how long we have actually suffered from it's affects.  It may very well have been active all the way back to our pre-teen years.

Have a great weekend, everyone.

Heather

[Zacksmomi]

thank you
D

[sllowe]

bump

[sllowe]

Heather and All,

Doc Q sent this to me once after I mentioned to her that my neuro said both Copax and Rebif and Avonex (the interferons) were equally effective:

BEYOND

• Dr. Paul O’Connor (University of Toronto) and colleagues reported results of the BEYOND study, evaluating the effectiveness of high and low doses (500 mcg vs. 250 mcg) of Betaseron® (interferon beta-1b) and Copaxone. Participants numbered 899, 892, and 448 in these groups, respectively. No differences were found in the risk of relapse, the primary endpoint, or secondary endpoints such as MRI findings. The findings indicate that the currently approved dose of 250 mcg of Betaseron is the optimal dose. (Abstract #LBS.004, Funded by Bayer Schering Pharma AG)

-Shell

[jensequitur]

I've been concerned about whether I should be on something stronger, because I haven't gotten any follow-up MRIs of the brain.  I'm glad to hear that it's just as good as anything else out there!  Now bring on the oral medications!

[Lulu54]

Thanks for the information - maybe this will help to ease the angst so many of us feel when we are told to pick our own therapy.  We want to get it right and it is reassuring to know there is not a wrong choice when it comes to the DMD's.

my best,
Lulu

[WarKitten2008]

HI Heather

Great post and info,  I as doni, think its great that you can share these
things with all of us.

I do have to say, I have often wondered these past several months, if
this is somthing I have had since mid teen years, especially because
I have had some of the symptoms since then, especially  the muscle
spasams and fatigue.
most other things didnt get bad untill about 5 or 6 years ago. well --bad enough
to decide that I needed to find out what was wrong.
I am still lucky enough to be still independant and walking and driving, ect...
the chores and all that just take a whole lot longer these days with the
fatigue and pain at anygiven time.
Thank goodness for the meds on days like those.
                                                                                  Warkitten2008

[sllowe]

Hi Honey,

Your experiences with your Dr are priceless and it's wonderful that you bring them to us, as you do with all of your knowledge, and experience.

I believe you will find that data she gave to you in the "BEYOND" study.

That is the one my Dr. mentioned to me, ref the same.

Stay warm, gurl,
-shell

[doni54]

Hi Heather,

Thanks for sharing this info with us, good stuff.

I liked the last paragraph.  Even though I don't have a dx yet, when the neuro stated that if I did have MS and had been suffering these symptoms for as long as 20 yrs,  that he wouldn't think I would still be able to walk, especially with no treatment over those years.

I could have easily quit trying to walk last year, but I still keep tripping along.  I don't know yet if this is MS, and I can't be 100% certain that my symptoms go back 20 yrs.  I only took note when they became debilitating in 2006 and did my timeline last year.

Keep talking to your neuro and telling us what her opinion is on all the things we discuss here.  She sounds like a really great person as well as a great neuro.  It is so good that she will talk to you and answer your questions so openly.  She is an asset to you and all of us too!!

Thanks again, Heather!

Hugs,
doni