Do the drug studies impress you? - Multiple Sclerosis Message Board

Lisa_P · 07-16-2007, 03:25 PM

I don't find any of them compelling enough to go back to the injection site reactions or the flu-liuke symptoms that just destroy my few "good days." Am I missing something? I read those drug inserts and I can't find anything that says "WOW--THIS is exactly what I need, THIS will improve my life," you know? But the only alternative seems to be a difficult diet and trying to exercise when I can barely move some days... I just want to die, but MS isn't terminal, so I guess it's just a suffering 'til I go kind of thing?

PghGuy00 · 07-16-2007, 03:42 PM

I have to say, I'm in agreement with you. Being that the Interferons only boast a 30% or so effective rate, and given the side effects I endured, I would probably not go back on them either. But, I think for anyone new who has never tried them, it is worth a potential shot at working for them.

duttin · 07-16-2007, 05:45 PM

The studies aren't that impressive ,but these disease modifying meds give us options.There purpose is to slow the coarse of the disease down,it don't cure it,it doesn't remove the permanant damage,but it may prevent further disabilities.

I'm on rebif and the flu-like symptoms were minimal at best.I have had the site reactions,but neuro says lets give it a year.So I'm taking his advice,changed my diet just alittle and have stopped smoking.Have I seen a difference ,only that the lungs are a little clearer.But the MS symptoms are still present,but hopefully down the road I'll see a difference.

Hopefully they'll come up with some different meds in the future.

MSNik · 07-16-2007, 08:24 PM

Also on Rebif, and only had flu-like symptoms for a few (3) months...then they all dissappeared. I also chose to use Aleve, rather than Motrin or Tylenol, since it lasts up to 12 hours...I take my shot around dinner time, and I can do anything I want, 10 minutes later...it doesnt affect my sleep at all either.
I really think that when you look at the studies, not so much the inserts, you will see that if an interferon can reduce MRI activity and relapses by more than 50% which some studies have proven, then its a good thing. As Nuffs said, its not supposed to cure us, but rather to prevent progression. For the most part, they do that. I know people on Copaxone who have been relapse free for a full year so far. I myself, have not had as much luck on Rebif, I did have some small relapses, however at my first MRI on it (after 6 months on the drug) I didnt have any addditioanl legions and nothing showed up on the contrast...this is amazing, since I was dx with over 50 legions to begin with. My one year anniversary of both Dx and Rebif is coming, my next MRI is the end of August...

I think that mentally, taking a MS THerapy drug helps too. It helped me regain my memory and gave me stamina...it also helps me to know that I am doing everything possible to fight my MS, and not let it take me over...that initself is worth 3 shots a week. Im not as tired as I was...Im not as afraid as I was...and Im not really showing any new symptoms beyond the occasional heat related incident....so, for me, its worth it.

Nikki

Lisa_P · 07-17-2007, 06:25 AM

I guess I just don't have a lot of obvious flare-ups anyway so it just seems so pointless. Mine is just a daily struggle with fatigue and heat and trying to walk right... I would trade this mess for flare-ups of ON any day because that DOES go away eventually. (Leaves some "souveniers" yes, but, generally, it gets better.)

I have no idea how many lesions I had at first or after my last MRI-- no one volunteered the info, and I didn't know to ask. And, as far as I know, my diagnosis never progressed beyond "probable MS."