Recommendations of MS medicines - Multiple Sclerosis Message Board

maggie ms · 11-18-2008, 01:27 PM

Hello Everyone
I was just diagnosed with Remitting/Relapsing MS.
I have now been told that I have make a decision of Medicine to take for the rest of my life, which is fine but .... I am not sure which one to choose.
Could you all please give me some idea of the ones you are all using and the ones that you have found that dont.

Avonex
Betaseron
Rebif
Copaxone.

I would really appreciate your help.

april1848 · 11-18-2008, 05:30 PM

Welcome to the site, Maggie. I'm sorry you were diagnosed with MS but this is a great place to realize you're never alone. I'm sure there are a million things running through your brain right now!

Which med to choose is a very personal thing. I've been on Avonex for a year now. The awesome thing about it is that it's only once a week, and you don't get any injection site reactions because it's injected into your muscle, not just under your skin. The needle looks intimidating, but it doesn't hurt. Personally, having blood taken and IVs inserted hurts a lot more to me.

The bad part is the side-effects, which are flu symptoms--fever, chills, aches and pains, etc. In the first few weeks of it, I got VERY sick. The only part of me that didn't hurt was my stomach. For most people, the side effects decrease and go away completely in 3-6 months. Some people don't get sick at all. The sickness starts about 4 or 5 hours after your shot and lasts around 24 hours. The degree of sickness and the time it takes for you to feel better from it improve with time.

For me though, and I'm not in the norm, I still get sick, though it's nothing like the beginning--that was rough. I still get chills, headaches, fatigue, and aches & pains. But it's not even comparable to how it was when I first started. I inject on Friday night, and on Saturday I wake up feeling pretty lousy, but I feel better as the day goes on. I know it's not normal to get this sick after a year on Avonex, but I don't want to switch meds yet because I LOVE that it's only once a week and I also love not having injection site reactions.

There are people here on the different meds, and some who take no meds at all. I'm sure others will pipe in here. But it's a personal choice, and everyone reacts differently--also, you can always change meds if it's not doing it for you.

Consider how many injections you want to do, the side effects, and what your doctor thinks. Remember that none of us can definitely tell you our choice of meds has actually helped our MS--all of these drugs are really a shot in the dark. I have had no relapses so far on Avonex, but that could be my MS, not the drug I chose. None of these drugs will help your symptoms. Their main function is to possibly reduce disease progression by 30% or so. Whatever you choose, good luck and welcome again to our MS family. There are many smart and kind people here who know how you're feeling.

maggie ms · 11-18-2008, 05:43 PM

Thank you April for your reply
Yes you are right...I have a million things going through my head but mainly I just want to try to "beat/control" this.
What I have learned today as I have "surfed" this web site is that I am not alone, that is for sure. The way that people support one another is great!!
This is my first experience with MS, and it has affected my eyes, in the begining, 6wks ago I had double vision, and now it only happens when I look a certain way. I have not returned back to work yet but I an hoping I will soon.
When you take your medication on Friday, how do you feel when Monday rolls around?
I definatly prefer the once a week needle that is for sure.
There are alot of different things to think about that is for sure.
Thank you for your help.

april1848 · 11-18-2008, 05:57 PM

The internet and books is a great way to deal with MS in the beginning, and after. Learning and talking about MS helps it be less scary and less lonely. Ignorance just breeds fear, and knowledge is power.

Have you gone on a round of IV Solu-Medrol to help your eyesight? I've been fortunate in not having eye troubles, but the steroids are the treatment for that, and other symptoms. Hopefully it'll be over soon, and it won't happen again for a very long time!

I do my shot on Friday night (and make a fun ritual, like a party out of it) and I'm better by Saturday night. I have never, even in the beginning, still felt sick by Sunday morning. I know of others here who were on Avonex and felt sick for days, but that's not the norm, just like my continued side effects.

The once a week part is definitely a great positive. It's less time, especially when you're feeling good, that you have to deal with your MS in such an ugly manner. I think though that the flu side effects of Avonex are worse than the other drugs. I am lucky in that I don't work on weekends, and Saturday is a convenient day for not feeling too hot. I've found that it also gives me an "excuse" to rest since I don't do that enough during the week.

I am still in the "beat/control" thing. I think I always will, to the point that MS can be controlled. I'm still learning my triggers and things I shouldn't do, but I've been lucky so far. It's a huge deal and horrible thing to have, but life isn't over. I feel like I've grown for the better because of MS, that's one good thing I can say about it.

MarissaC8 · 11-19-2008, 11:55 AM

I have taken Copaxone (didn't work after awhile because I had too much scare tissue), Betaseron (didn't work for the same reason), now I take Avonex (Intra-muscular shot once a week) I have had the fewest relapses while taking this and it's convenient only once a week.