how long to wait starting copaxane

[earth2mac]

i was diagnosed back in late 2006, with only optic neuritis and over the next couple years just a few legions on brain/spine from mri. My doctors just say i should be put on the meds to be safe, but have been healthy all this time with no symptoms. I went ahead and got the copaxane, but haven't started. Honestly i don't want to start and want more of alternative therapy if exists or oral pills once on market.

Is it really necessary to begin, even without symptoms or wait if i do get any? Maybe i will only have the isolated episode and no more for years..

[DancesWithPugs]

This is only my personal opinion, so take it for what it's worth. I honestly thought similarly as you do, although I did have symptoms from my first spinal lesion. I started Rebif right away, but due to an insurance change (having to go off it while they got my name right, etc. lol), I went into denial and played the "what if" game.

Well, I got nailed with a pretty big wake-up call that included two more spinal lesions (which are so not fun) and another brain lesion. If I knew then what I know now, I never would have taken my chances. Now, I'm awaiting my first infusion of Tysabri because I am done messing around.

Copaxone may not be the drug for you, or maybe it works great for a while until you decide to try one of the oral meds. Honestly, the only way you'll know for sure is to do nothing and let time do its thing.

It's a very personal decision, that's for sure, and I wish you the best with whatever you decide.

[Shandi]

This is just the opinion based on the experience of my DH.

He had 3 episodes of ON from 2001 - 2005. Within those four years he went from zero to one lesion. From 2005 to now, he went from 1 to at least 20 that I was able to count; too many that the doctors just say multiple.

We know that lesion load does not always mean disability, and DH was lucky to only have had one relapse in five years. It is obvious that the disease is active and it only takes one perfectly placed lesion to cause the disability.

This was a wake up call for us. While the CRAB drugs only cut relapses by 30%, THAT lesion that sends your bladder to emptying or THE lesion that causes you to constantly trip could be prevented.

Of course, it is a costly, personal decision. That was our reasoning. DH has only been on Copaxone for 4 days now, but aside from the 20 minutes of sting/itch, no problems yet.

[knuckle]

earth2mac,

If you want to an "alternative" MS therapy I suggest you research Low Dose Naltrexone (LDN). Start with these websites:

www.LDNaware.org
www.lowdosenaltrexone.org
www.LDNscience.org
www.LDNers.org

Also, I suggest you google the following supplements with the words "multiple sclerosis".

Alpha Lipoic Acid
Curcumin
Vitamin D
Magnesium
Fish Oil

Along with a low fat diet, a healthy lifestyle, all have been shown beneficial to managing MS.

[twisterred]

Ms is a progressive disease.
So, even if you aren't treating it, it is (often silently, without any clear feelings).
It might be doing just a little bit of damage, but a little bit of damage over time can turn into a lot of damage.

After I was diagnosed four years, like you, I could walk, run, etc without any clear damage.
It would be three years before Copaxone would even be available. My doc had me on monthly steroids.

Even with all of that and the 14 years I have been taking Copaxone, I can tell damage has been done. I look normal, but can't work any more due to fatigue and cognitive trouble (which weren't big issues after four years with the disease), my handwriting is almost impossible to read and heat weakens me much more.

I have friends who are the generation before me regarding MS treatment and most of them are in scooters, wheelchairs or at least, walkers.

Other treatments, like LDN seems to help with many symptoms, but I'm not certain about preventing lesions.

It has been proven that starting treatment sooner than later has been best. IMO, really consider it.