Hello to all,
I was just recently diagnosed and will be starting betaseron...they will be titrating my doses..what i am looking for as any information i can get..personal experiences.. thank you

Welcome Wyatt!

I too picked Betaseron when I first started. it was not a bad drug for me, and I had very few flu side effects. A few advil, or taking the shot a few hours before bed would help prevent having to deal with many of them. It turned out my liver didnt like it, but they do routine screening to be sure your ok.

I liked mixing my own, and that I didnt need a fridge. it was a great med, but it didnt like me.

Make sure you hydrate well on shot days, and that you take your premeds in the early days, as you titrate upwards, it will help.


Good luck.

Welcome to the Beta club. I'm a newbie too but have eight painful, bruised, red, blotchy round discs to prove my allegiance. I'm probably not the best advocate for the drug since I'm having a rough time of it; but I'm going to stick with it.
My experience so far has been;
Took the full dose straight away- just to see how bad it could get- and never took less than full.
Some days are better than others.
Belly shot gives less flu but quicker to take hold.
Legs are painful to the extreme for a week or more after shot.
Buttocks are less painful but the flu hits me harder a lot later after taking it.
The day after is usually worse than the flu episode. It's like hangover plus one.
It's either a shot day (woohoo! look forward to that-not) or a recovery day. Neither are that great.
I'm having trouble fitting my life around treatment and recovery. Work is on hold.
Some days I think it's worse than the disease itself and I've taken so much on faith and 'research' that maybe I should take the natural no treatment road like others and be free...
I have had the most awful cold to contend with as well this last week and a half which really hasn't helped.

Keep us up to date with your progress. Would be interested to hear how you (or anyone else) is getting on.

Welcome to the Beta Club

I've been taking it since 2002. My overall experience has been a good one. I used to take Motrin after a shot, but now only rarely.

My only problem is the site reactions. The pink/peach oval stays for quite some time. In the summer, I wear capris rather than shorts (to cover the spots) and a similar outfit for swimming.

I no longer take arm shots. A couple of years ago, a huge bruise from a shot shied me away from the arms.

If you have any questions/concerns, keep in contact with the nurses via Betaseron and your doctor.

I wish you all well!

Niko

Wow, I forgot all about those pink marks that were left from the Beta. it tooks months for them to go away. I found massage, and good skin care helps.

Hi Wyatt! Welcome to NeuroTalk and to the Beta Club!

I've been on Beta for 2 1/2 years now. At first, I got bad headaches and had to take Tylenol. After awhile, the headaches from the injections went away.

I still inject in all eight sites, but I do still get the pink and sometimes purple site reactions on my thighs and my abdomen. Because of tremors, DH had to start giving me my shots. He does pretty good, too.

With my last shipment this month, I finally got the new, smaller needles. However, even with the tiny needles, sometimes the injections hurt for awhile.

It's hard at first because there are a lot of steps, but then it becomes easy. Best of luck in your new adventure!

Bump.

I can't believe there's only a few of us who can help this newbie?

Welcome to the forum. I hope some more peeps will be along shortly to add. Try a search for some key words. That helped me decide. And read the old posts of some of this weeks posters.
There's a lot of info out there. take care

betaseron.com has a nice program where another person who matches your lifestyle will call and talk to you about their experience. peer mentoring. its kinda cool.

I have a friend who has been on it 8 years now, and went from being horribly ill to quite stable. She has the occasional fever after the shot, but takes an advil, and goes to bed.

Most folks take it at night to avoid the side effects. I did, and that worked great.

Check out the NMSS.org Betaseron.com or google it.

...for just over a year. I had some headaches and just a little bit of the flu-like sx. But after a few weeks they went away. It never was too bad to tolerate. I still get red spots occassionally at the injection sites but they go away after a couple of days. The smaller, 30 gauge, needle is working out really well. I don't feel it much at all. I have quit using the auto inject and just do it myself. One day I just got brave and learned that it was actually less painful for me. I feel like the Beta is really working. I haven't had a bad, bad relapse for several months. So I'm really hopeful. My liver function is doing well as of last week when I went to my neuro.

I hope the Beta works for you. If you have any more questions, I'm happy to answer what I can. There are others here who know a lot more than me. So someone can usually help out.

I'll keep you in my thoughts!

I've never heard of the peer mentoring. I have a Beta nurse that calls to check on me periodically. The peer program sounds very helpful.