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View Full Version : Do the drug studies impress you?


Lisa_P
07-16-2007, 06:25 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?

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PghGuy00
07-16-2007, 06:42 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, 08:45 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, 11:24 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, 09:25 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."

duttin
07-17-2007, 01:07 PM
If ya ever have a case of ON(which I pray you never do) you will rethink it.

As far as not being able to walk that ranks evenly in my book with the ON.After a day at the gym and PT my legs don't move,its a daily struggle to get the brain to correlate with legs.

Hopefully with the disease modifying meds and other symptom meds this MS progression will slow down,I am not ready for no darn wheel chair.I wear leg braces and use a cane and I'm doing everything in my power to reverse some of the damage,make these legs stronger.

As far as thise disease leaving so called souveniers,yes it does and they can be relentless.

If My neuro told me I had probable MS,and that I had lesions I'd right on his behind side for answers and treatment.If its meds or life style changes.

I have seen what progression of this disease has done to me and if it can attack me like it has it can effect others rapidily to.

Lisa my advice to you is to keep an eye on your symptoms and I hope you stay and only probable.

Lisa_P
07-17-2007, 01:12 PM
Well, I have had ON three times with differing degrees of pain, temporary blindness, and lots of resideual eye troubles, so... I still think I prefer that to the daily struggle (knock on wood! because I may prefer it, but I don't WANT it!)...

Lisa_P
07-17-2007, 01:16 PM
The main problem (and it IS a problem) is that I haven't had the same doctor since I was diagnosed in 2003 -- moved five times in three different states, so... I'm hoping I'm settled now so I can get some consistent care! Definitely due for a re-evaluation by a Specialist!

 

 

 




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