Well, after waiting it out 6 months & getting another MRI, I finally have a diagnosis (AND a 2nd opinion from another neuro) of MS. To be honest, i'm not too shocked. I kind of saw it coming awhile ago, so i'm glad to be able to get some treatment now before i have to deal with anything worse (my symptoms are very mild right now). I need to choose which medication i want to go on. I'm kind of between Rebif & Betaseron right now, after talking to the dr today and reading up on both. I haven't heard anyone on here talk about Betaseron. Anyone have any words to say about it?
Congratulations on handling this so well. Im very proud of you. You say that you werent really surprised to hear this coming, but still.....its a huge thing to make it official. You sound like you are doing well with the news.
As you probably know, Im on Rebif and can answer all your questions about that, but you are looking for people on Betaseron so I wont talk about Rebif at all. I do know of one person here, who will probably respond to you who is currently on Beta- but I also have two friends who are on it as well locally. Both of them have been on Betaseron for 5+years and are doing well on the drug.
Betaseron was the original Interferon and one of the first FDA approved meds for relapsing/remitting MS. Its kind of tried and true. The reason they came out with Avonex and then Rebif, is the drug companies felt that they could expand on the whole interferon idea; thus providing choices to people like us...also, Avonex and Rebif are slightly stronger, and have been known to be "available" for those who find that after some time on Betaseron that they want to try something stronger, but maybe not as strong as Tysabri. you can look at that two ways, one is that you can start easier and work your way up to stronger..or you can "hit it hard' with Rebif, like I choose to do and then if you find you cant tolerate it, you have many other options, or if you do tolerate it, hopefully it will keep your MS symtoms and lesions where they are now and not allow progression. Im grateful that after a year on Rebif, Im in that catagory!
I will say though, that the people who I know of who are on Betaseron seem to be very happy with it, do not complain much of any other symptom after the initial time period of getting used to the drug (all interferons cause flu like symtoms in the beginning, although these CAN be managed) and they are still on it, even with regular checkups, so that must be positive as far as radiographical evaluations go....I think whichever drug you choose to go on, youll be fine. Remember taking an MS drug is choosing to manage your MS, not allowing your MS to manage you. Congratulations on making the choice to do all you can.
Thanks Nikki! I appreciate the quick response! I actually only didn't ask about Rebif because your previous posts have been SO helpful & informative. It's great that you come on here to enlighten the rest of us "newbies". I was actually on here for awhile earlier this year, but kind of came to a dead-end when my symptoms went away mostly, and my mri was not too conclusive. unfortunately waiting 6 months showed a few more lesions and an added symptom (vertigo), so now it's conclusive.....
well, at least i'm not in limbo-land anymore. and it could be a LOT worse!!!
Well, its nice to hear that Im appreciated somewhere. Im having one of those days where I wish more than anything my husband would wrap his arms around me and tell me it wil all be okay...but he wont do that, and sometimes we gotta find the support we need where we can get it! Thats why I try to help all you "newbies" as you put it...when I was one, certain people helped me thru the initial first few months where I thought I was going to lose my mind, now, i just try to give it back.
SO youre a Rebif expert due to me, huh? LOL. I really dont want to monopolize the thread or get into the Rebif converstaion, but if there is anything you want to know about R, post to me specifially and Ill be glad to answer your questions.
And Erin, it CAN always be alot worse. Thanks for reminding me. Im having a lousy day, but you are right- it can always be worse. This too, shall pass I always say....and it will. And, yes, not being in Limbo land is definately a step into something more positive. MS is a pain in the butt sometimes, but its mostly manageable. Life will only change if you let it...you have to make some small adjustments, more sleep, less exercise in the heat, less outdoor activities overall in the summer, sometimes even delegating so that you dont get over-tired..but nothing you can learn to work with. We have some of the most inspiring people Ive ever "met" on this board....keep reading, you can learn alot! And if you have any questions, please know we are here for you.
Big hugs, and let us know what drug you decide on!
I am on Betaseron - was diagnosed and my Neurologist receommended it origninally. I was later diagnosed as having secondary progressive - stopped the drug (figured that it would no longer work). Changed healthcare - figured I would no longer need the one I had since I was no longer using BetaSeron. All of this ended up being very very very stupid!
Medically I ended up getting very worse.
Ended up falling down and being admitted to the hospital.
My neurologist ended up putting me back on a drug and once again, I chose BetaSeron.
Pathways was nice enough to support me to actually pay for it (current insurance would make me pay over $1000 a month - proving what a horrible choice I made).
So, even with secondary progressive, I'm back on BetaSeron and have been doing well ever since.
Hi there Erin,
I don't have any advice on yr medication. I'm on Avonex But wanted to say welcome to the MS world here..
This board is flooded with information. Glad you got a dx at least you have a name to yr illness. Better knowingat least you know whats wrong. .
Good luck in your choice of meds.
I have been on Betaseron since May! I have done very well on it. I didn't have many side effects, just a few slight fevers. But my dr. recommended it and I am very happy with it. The nurse's at pathways are great. They call you when it is time for a new shipment, you don't have to mess with any of it!
I was on betaseron for about 1 year and a half. I didn't get any major side effects or flu like symptoms. Overall I can't complain. I did get some "shot spots" as I call them, injection site reactions that turn purple if I go in the sun and don't go away for a long time, but those were infrequent - maybe three total. My neuro was suggesting I come off it though or combine it because my MS was too aggressive so I added monthly steroids to it. Seemed to work great, but I stopped all meds to work on getting pregnant, and that's where I am now.
I would recommend it as a great place to start. Copaxone was a little scary for me because it's every day and Avonex has the longer needle which I couldn't deal with. Rebif and Betaseron are very similar, but from the research I did before choosing, Betaseron has a SLIGHTLY better track record. You do end up with an extra shot every other week with Betaseron though. Good luck whichever way you go and I wish you the best!