For those of you on one of the disease modifying drugs...

For those members that ARE on one of the DMD's (disease modifying MS drugs) I would like to know how your course with your disease is going, since you added the DMD's to your "fighting back" arsenal?  Have you noticed less relapses?  Have you noticed that you still have them, but they are less severe, than before starting the DMD?

I would be very interested to know everyone's experiences.  I know that the DMD's are not a cure or will not stop relapses completely, but am curious to see how your course of MS has changed (or not changed) since starting the drugs.

And follow up MRI's...since being on one of the DMD's, have your MRI's shown a progression of lesions or an actual decline?  I know that we can still develop lesions while on these drugs, so maybe that's a totally misrepresentative question...just curious!

Thanks in advance,
Heather

[essdipity]

Hi!  As you know I have only recently started on Copaxone, so I'm one of the ones who cannot say with any degree of accuracy how I'm doing.

The problem with DMDs is that it's impossible to tell how much worse we might have been without them. Statistically they do work and that's been demonstrated, but for any individual, who knows?

Still, hearing what others here perceive should be interesting so I'm glad you have asked.

Happy Easter,

ess

[Amyloo]

Hi,  I have no clue yet.  I am still trying to diferentiate between "relapse" and "symptoms".  I will say this; all my original stuff that eventually got me diagnosed last Dec. (leg spasms, inablity to walk, urethra spasms, horrid pain, "bees" buzzing under skin, etc.) have come back with a vengance in the last couple of weeks.  Now, this may be a coincidence, but I started back on nutrasweet 7up about a month ago.  Lots of it.  (I had switched to splenda; I drink ALOT of fluids everyday.  Pacifier since quiting smoking.)  Now, boom.  Symtoms (symptoms) galore.  So I am now off it, and will see.  I know there is info back and forth on this, but I do wonder if it could contribute to exacerbations.  But I digress; I want to hit the four month mark with Copaxone and then kind of reasses.  Love you Heather, Amy

[gollie]

Hi Heather:

How are you? I like that you have posted this question!
as I am in the same boat with amy and ess. I can't really
say yet. Its a fair question, I hope some others
here will be able to shed some light for us all.
It would be great to hear some personal experiences
on the subject.
I am feeling better today, I must have had a little flu bug.


Amy: Im with you still trying to diferentiate between everythig

                                      Gollie

[jensequitur]

I had one bad flare before going on Copaxone, and I've had three small flares since then.  Since I've only had the one documented flare pre-Copaxone, that's not enough info for me to say that Copaxone is helping.

It's all very subjective, of course, and I have the sneaking suspicion that I'm actually SPMS, but my neuro hasn't commited to it yet.  If i am, then the Copaxone won't help.

[sllowe]

Hi Heather,

Great idea!  I want to add, but will have to do it later when have a few minutes!
Have to keep this one at the top!

SL

[gollie]

Jensequitur:

May I ask how long have you been using the Copaxone?

                         Gollie

[LATW]

Hello,
This is my 5th week of Avonex.  I can't tell yet either.  I am seeing that I have about 2 good days out of the week. The rest is spent recovering from the injection.  

I have noticed in the past few days that my vision is getting better. But is that due to the Avonex or the normal cycle of Optic Neuritis?

La

[jensequitur]

I've been on Copaxone since... hmm...  I think June of 2007.  I haven't had an MRI since I've been on it, so I have no idea if I have any new lesions.  Maybe...  Some things are working again, and some things are still wonky!

[sllowe]

I started Rebif last year.  The major issues of my episode
had stopped prior to starting the meds.  The residual issues
and limitations have not resolved.  I haven't had an episode
though to that degree, and it's been a year since the 1st attack.

There have been a few occassions where varying MS symptoms
would rear up for a few weeks, then subside and get replaced with
something else.  They are tough to get through, but mild when compared to
the 1st one. I'm grateful for that.  Clinically I'm doing well. Will be asking
the Dr for new MRI's to see how that damage is doing with being on meds
for a little over 5 months.

I pray they have helped me, and others who are on them.

[gollie]

bump