New med for me-Avonex (starting soon)
 

Hello all,

I've decided to not take Gilenya, can't take take Tysabri becuaes of the auntibodies I have, failed at Copaxone and Betaseron raised my liver enzymes way too high so had to stop taking it. I'm going to start Axonex at half dose and watch my enzymes on it to see if we need to stop it. In the next month maybe? I will begin it's use. I dont know how much it costs as the insurance said, "It's too new for us so we don't even have the price on that med yet. MS is winning. No fun at all. I'm reading Minding my Mitocondria looking at diet change. I don't want to take medications anymore but I'm getting worse not being on one. Those of you that take it, how much does it cost you (out of pocket)? I wanted to hear what you all think about my situation and share the experience with you all.

Thankk you,

Eric

Too new?? Avonex has been around since 1998!

Good luck with Avonex, Eric. I was on it about 12 yrs ago for 7/8 months. That's as long as I could stand the side effects. No liver problems, though. Don't remember the costs, but I'm sure it was less than it is today.

I then took Copaxone for a little less than a year. No side effects, but no benefit either. Avonex was the better DMD, if it weren't for the sides...I think it was working to keep Flares at bay.

Let us know how it works for you.:)

Maximizing INTERFERON-Beta effectiveness

http://www.thisisms.com/forum/avonex-f5/topic4186.html

jackD

I've been on Avonex since 1997 with no problems. Yes, liver enzymes are up but my neuro says they are within the expected high range. One time she did an extra lab work before the usual every 6 months but I have done very well with it.

Good luck! My MD has spoken about putting me on half dose Rebif and seeing where that goes. Beta made my liver go crazy! Copaxone was miserable for me. I have had cancer, so they dont want me on gilyna and well...they hate that I walk barefoot thru a minefield.

I wish you the best. :hug:

If ins. doesn't have a price for Avonex, I'd talk to someone else. It is not like it came out yesterday. Drug companies set the price before drug hits the market. It's a specialty drug so maybe they have different reps that handle those drugs and are more knowledgable. Contact the drug manufacturer and get them to help with ins. co.

Good luck.

I appreciate all the input. Thank you all for your thoughts.
===

@ jacksonsmommy: I meant "new to me" Thank you

If you have a problem with Liver Enzymes with any of the Interferons you may have problems with all of them. However, since Avonex is Intra Muscular, therefore a much lower dose it may work well for you. Been on it over 11 years, no problems.:D

If it turns out that none of the Injectables work for you, there is BG-12 which should be out this year, at FDA now, it is exceptionally well tollerated by most people.

I was on Avonex for 5 years w no exacerbations or lesions until the last year when I got 1 lesion. I was switched to Rebif then. If R din't exist I would have stayed on A. Just one lesion in 5 years is excellent.

Then there is the flu which gets better but not quickly. I took the shot on Saturdays at 6PM and slept through the worst part of the symptoms and was perfect by Monday.

Be well,
ANN

Now for the negative suff.
 

You will learn that Avonex takes at least 6 months to start working properly. If your MS is active it will delay that time a lot. Do not expect to see much MRI results for 2 years.

The antibodies to other interferons may also prevent the Avonex for being fully effective. Your neuro can find the latest on this.

Good luck! Ask questions.

jackD

p.s. I took Avonex for 10 years. I stopped after no change in my MRIs in the last 6 years. I still take the supplements that I found helped the Avonex work and lowered the MS progression activity.

Hi Jack,W, and Ann
That was my fear about the liver thing but we will start at half and monitor closely. I also worry about how beta made me suicidal (I've never experienced that before). I wonder if Avonex brings that on. I will look into it. Yes, sir, I've heard good things about that new med. I could wait on its passing and take nothing until it does or start Avonex. Neuro thinks I should be on something.

DoctorT,

Depression is a problem w all interferons. I didn't know I had any on A but I surely knew it on R. Be careful.

I see that you had elevated liver enzymes on C. I haven't heard of that. That one is not an interferon.

Best to you,
ANN

Hi ANNagain,

yes, I have had elevated enzymes but it was not on Copaxone it was from Beta. I will def. be careful on it. It it makes me feel at all like the Betaseron did with suicidality I will not take it. That's my plan. I look forward to the new oral medication to be approved. I will look at that one closely too. :) Thanks for your input and your insights. :)