Multiple Sclerosis (MS) Support Group

I'm sorry to here about your Dx. but glad you found us....
Welcome.
I took Beataseron for almost 2 years before it stoped working for me.
I am on Tysabri now and doing well....
There are a lot of good people here with a lot of good info.
Welcome again....
april

Welcome....I was dx in April this year. My choices were Rebif and Copaxone. I felt like an idiot making the decision. I researched until I was exhausted. Both have similar success rates but I chose Copaxone because of fewer side effects. I've been on it since mid-May. Too soon to know the benefits or lack of. Good luck making the decision. Rest assured that whatever you decide will be a "pro-active" choice. There is some comfort in that....

FIRST LET ME SAY WELCOME N AS FAR AS TREATMENT GOES U WILL FIND IT 2 BE TRAIL N ERROR UNTIL U FIND ONE THAT WORKS BEST 4 U. U WILL FIND ON THIS SITE ALOT OF US TAKE DIFFERENT MEDS NOT BECUASE ONE IS BETTER THEN THE OTHER, BUT DUE 2 THE FACT THAT 1 MED WORKS BETTER ON OUR BODIES THEN THE OTHER. THATS THE FUNNY THINGS ABOUT MS WE DON'T ALL SHARE THE SAME EXACT SYMPTOMS SO THERE 4 THE MEDS DON'T ALL WORK THE SAME ON EACH OTHER. WHAT I DO RECOMEND IS DO ALOT OF RESEARCH N TALK IT OVER WITH UR DOCTOR N UR FAMILY N SEE WHICH WILL WORK BETTER 4 U.

Hi AngelSin,

I was Dxed 10 years ago, and I started on Betaseron, did that for about 6 months and hated the side effects (headaches, body aches, etc) and I switched to Copaxone. I have been on it ever since.

At first I was unhappy about injecting daily but within a couple weeks, I was so happy that I had no side effects I looked forward to my daily injection. It takes me less than 2 minutes a day, (I sometimes do it while I chat on the phone) and I've been pleased with it.

The only issues I have with it are some mild site reactions, but since I've started self injecting as opposed to using the autoject they have virtually disappeared. The reactions can be itchy, sore bumps, but cortisone cream helps.

If you have any questions, please let me know.

xoxoxo Jen

I was DX in February 2008, so I had the same questions as you. I had the choice, too with the CRAB drugs (Copaxone, Rebif, Avonex, Betaseron). I decided to go with Rebif and I've been really happy so far. I like the small needle, and three times a week as opposed to daily. I had some flulike symptoms on the 22 mcg dose, but you learn to adjust your premedication routine, time of day you do your shot, etc. You tailor your regimen to make a minimal impact. ALL the drugs have potential side effects. Do your research, talk to your doctor as well as others like us, but at the end of the day it's your body, and therefore your decision.

As far as the trial drugs go:

My neuro is a test site as well. The reason I chose not to participate with study drugs is that I wanted to use a treatment I knew was proven to work. Yes, needles suck, but you get used to it. I'm going to exhaust all the treatments that definitely work before I go on to treatments that MIGHT work.

Welcome, and we're glad you're here!

Thanks for all the input. For those that use the copaxone has anyone had the side affect of Lipotophy (sp)?
Kansas you bring a good point to the table and I know that is one of my concerns, although the study is in phase III and looks good, what if I am not receiving the medication but the placebo. For me that would mean I am not really helping myself. The decision is hugh and to be honest it feels like a whirlwind of decisions have to be made.

I WAS ON COPAXONE BUT HAD TERIBLE SIDE EFFECTS FROM IT. MY BODY TOTALLY REJECTED IT. I WOULD SHAKE N WAS THROWING UP FAST HEARTBEAT. I ALMOST ENDED UP IN THE HOSPITAL. I WAS ALSO ON AVONEX WHICH DID WORK 4 ME BUT THE SIDE EFFECTS 4 ME WERE SO BAD (GAVE ME RAGE SO HAD 2 STOP THAT AS WELL) RIGHT NOW I AM ON 3MG LDN 1 PILL AT BED TIME N IS WORKING PRETTY GOOD 4 ME. C AS I SAID BEFORE OUR BODIES R ALL DIFFERENT AS WHERE 1 MED WILL WORK VERY WELL ON 1 PERSON IT DOES NOT ON ANOTHER. THATS WHY I SAID U HAVE 1 GO THROUGHT TRAIL N ERROR UNTIL U COME ACROSS A MED THAT WORKS 4 U.

I cant be of that much help because my doc has me on ibuprophen cuz he wants to humor me-anyways I do take antidepressants cause I have high depression and anxiety issues. I take lexepro for it. Other than that I have to wait for new nero/appt. HUgz!
take care and update us.

If you are new to MS you probably have not heard about low dose naltrexone. An 'off-label'
treatment with no needles. Go to ldn.org for info written by a neuro. I've been managing my MS for over 20yrs & have been able to keep it in remission without steroids.

The drugs are all pretty similar, some just work better/different for other people. Here is my experience...
Betaseron when first dx'd in 2006, worked well but side effects were too much. So after about 11 months switched to....
Copaxone, which I loved, but my mri after 8 months showed *significant* progression. So I switched back to...
Betaseron, this time the side effects haven't been so bad actually, and I know it really worked before...

About the FTY720 I was planning to go into the trial but now that I switched meds I would have to go for a 3 month drying out period before getting my first fingo/sugar pill dose, and that idea really frightens me. I strongly suggest you look into it, it seems to be extremely promising, and the study itself is not very scary at all. I suggest looking into it further before deciding on a crab. Post a topic here asking people involved in the study how they are doing, I've talked to several.