Progression Therapy - pros and cons

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D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/31/2008 10:39 PM (GMT -6)   
As I mentioned in a post below, my neuro appt is next week and we'll discussing progression therapy. My neuro has already talked about Copaxone as an option he thinks would be good... but then he said I might want to hold off until it gets to a more aggressive stage because right now it seems to be in the "benign" stage. Just annoying symptoms and pain.
 
However, I'm wondering what is the deciding factor for or against progression therapy? I have insurance so it's not an economic issue. I also know there's programs out there... so how do I choose which one, what should I consider?
 
I've read up on Avonex, Betaseron, Copaxone, Rebif, a very little about Tysbri ... is there another?
 
I have no problems with needles, or daily routines. I've been on daily meds for 10 yrs now with the thyroid and the past 2 yrs with my pituitary for migraines.
 
Anyhow, any and all input is welcome. I'm just really curious. Like I told the doc, I've aggressively pursued getting an answer to what's going on because I'm 53 and I don't want to get to 60 and find out I coulda been doing something that might have prevented a serious decline by that time.
 
When we talk next week, I kinda want to go in ready to discuss it clearly with him. He'll do what I want... wait or go for it. I have friends with a daughter who's been on Avonex for years now but they said they'd wait til the last minute before doing it now if they'd known... but I'm not sure that's good thinking either. Any input is welcome.


Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 8/1/2008 10:25 PM (GMT -6)   

Debbi,

This is a hard one.  This such a personal thing to decide.  For me, I felt so great starting a progression therapy.  I felt like I was doing something that would slow down the beast that is MS.  It can be scary though; especially when you are on something then you have a big, fat, horrible flare.  You become sure that you are taking something that is NOT working.  There are side effects to all of the therapies, even copaxone.  You have the flu deal with the interferons.  Since they are all injectables, you can have site reactions and site infections. With copaxone, you can have the IPIR (immediate post injection reaction).  You can be allergic to the med, again, that seems to be more common with copaxone than with the interferons. 

I was so sick at diagnosis.  I had spent several days in the hospital two different times.  I had times when I was barely walking.  I had times where I was vomitting in bed with vertigo.  I felt like I needed to do something.  Others, however, choose to wait for while.  They want to see how their body's will react to MS.  Some have very benign courses and it can move extremely slowly even without therapy.  Your friend has expressed the regret of starting a therapy soon after diagnosis. 

So, as you can see, I can't help you with this decision.   This is a very serious decision.  This disease is different for everyone.  There is just no way to predict how you will respond to meds or how your progression will go.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 8/2/2008 1:47 PM (GMT -6)   
Man, Gretchen you've said all the things I've feared in trying to decide on this... I'm gonna be listening alot to my doctor, I guess but he's in the in between thing... I think he's torn on the "you've progressed rapidly in the last two years with lots of symptoms showing up suddenly" but they're just nuisance symptoms that I can keep dealing with. The flip side is: if I go on the therapy now will it slow down future symptoms or damage? or keep it benign longer... or not make any difference and it'll flip when it flips or whatever... crud. MS is such a slippery slope.

My friend is like me, a real go getter who won't quit, but she's in the flu reaction stuff, the interferon Avonex.

I know the Copaxone is reactive to the tissue, that concerns me and I do react to meds ... so yeah, I'm thinking on this alot... Darn it. Was hoping for an "easy" recommendation. Kinda knew there wasn't one.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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