Any info. on Avonex ?

[Rondi]

Hi,
     I was diagnosed with ms a few days ago.  I think it's the mildest one but was afraid to ask.  I will soon start
Avonex.  I was wondering if anyone had any feedback, info., guidance they would be willing to honestly share.  I
have no idea what to expect - in terms of the med. & ms.  I would very much appreciate anything anyone would
be willing to share.  Thanks!  Roni    

[Zachie_poo26]

Hey you all! I was just diagnosed with ms about 2 months ago and ordered my syringes and Avonex earlier today. How are you all doing? It's been almost 7 years since there was a post on this particular thread. Any progress with the Avonex or the MS in general?

[Erin0313]

Roni,

   Sorry about hubby losing his job. The stress just piles up like crazy doesn't it? :(

  Good news about the cost not being as much as you were dreading though. It is important to be on some kind of DMD and it is sad when cost is the only reason someone can't.

My appt. went well. I have had a really crappy year with my MS. It has been one flare after another all year but I'm hanging in there.

The neuro has decided to put me on 3 more days of IV steroids next week and then 1 IV every month for 6 months until I have a stretch of time with no MS activity. Oh that sounds wonderful (no MS activity, lol)

I have lost strength on my right side which has always been my good side so she was concerned and doesn't want to take chances.
I guess it takes like 6 months for Avonex to get to it's full working potential so even though I'm on it, it hasn't been long enough and that is why she is adding steroids.

She is still optimistic that the Avonex will be good and I won't need constant steroids after a few more months. Thank goodness because I really hate steroids. I am lucky to have a doctor that I like and that seems to care. That's why I say that my appt went well.

Take care & keep me posted
Hugs,
Erin :)

[Rondi]

Hi Erin, thanks so much.  I really appreciate your email.  I'm wondering how your dr. appt. went & how you are doing.  I hope both answers are good.  I do have the binder thing with
the Avonex info. & am working on the $.  If I didn't get any $ assistance, it would cost me
$35 copay for a month's worth (4 injections).  That's not bad, as I was expecting it to cost
a lot more.  This is do-able but $ assistance would be great especially since my husband
lost his job.  I like to hear personal stories about Avonex (w/o the sugar-coating part) &
have been getting some.  I would rather know all the bad stuff ahead of time.  Fear of the
unknown bothers me a lot.  Thanks again.  Be well. I'm sending you lots of  good wishes
and a great big hug.  Good luck with everything!  Roni  

[Erin0313]

Roni,

   Hi again - I went to the neuro today and was still thinking of you :) so I picked up an Avonex package to read while waiting.

I was late - I REALLY have to work on that but I got lost driving which just happens sometimes so the doctor still saw me it just took longer.

Here's some scoop for you. I guess since your big worry is the cost the first thing to give you is the phone number for The MS Active Support 1-800-456-2255. According to this it will only cost you $10 a month for your shots (not bad $2.50 a week).
This phone number is 24/7 and can also get you to a nurse to discuss problems or side effects after you start. I like 24/7 because my problems don't happen between
9 & 5, lol!

I learned while reading that in a 5 year study nearly 90% of the Avonex patients were still active and able. That's a good number and I hope that both you and I are in that 90%.   :)

I also learned that Avonex is the #1 prescribed MS therapy and has been for over 9 years. That sounded encouraging to me also.

Ok that's it for now. If I keep going on then you could have just read that dreadful binder, ha ha.

Good luck & take care
Hugs,
Erin :)

[Rondi]

Thank you so much - hate sugar-coating & appreciate honesty.  I got the binder but not
ready to look at it.  I'm fearing the costs of the meds./my copays.  Lots of good wishes
to you & thanks again.  Take good care.  Roni

[Erin0313]

Roni,

   Hi & Welcome. Sorry too for the dx :(

   I have been on Avonex for 5 months and it has been hard so I won't sugar coat it. The beginning flu symptoms for me were like a freight train and sent me to bed for 48 hours. Then each day got better until I finally started to feel "normal" and it was almost time to inject again.

  Having scared the **** out of you  (sorry) , it is finally getting better and I on;y spend Saturday's in bed. The doctors told me it could take 6 months and I think I am right on track. If it stops the progression it will have been worth it.

If you do decide to go on it they have all kinds of tips like drinking extra water, taking tylenol or aleve before you inject, icing the injection site etc. I wasn't smart enough to find these things out in advance so probably suffered way worse than I had to.

Avonex has there own web site plus they will give you a big binder that I was to overwhelmed to read. READ IT!

Good luck - take care & hope to see you around

Erin :)

[rendean]

Hi Rondi,

Welcome to our forum. As Shell said, sorry about the diagnosis. You wrote that didn't know what to expect about the disease and the meds. If you look at the upper hand corner of this page you will see a yellow icon and next it Health Pages.

In the Health Pages you can find all sorts of information on a variety of subjects and how MS affects your life.  Feel free to post a question on anything you don't understand or would like specific answers to and we will try our best to get you an answer.

Being newly diagnosed brings lots of emotions so don't be surprised when you are hit with a rollercoaster of emotions. This may last a while. I've been diagnosed just 6 months and I find there are a lot of good days but still a bad day will creep into the picture. That's when you turn to this forum for support.

I hope you stick around and let us get to know you!

Warmly,
Ren

[sllowe]

Hi Rondi,

Welcome! Sorry about the dx :((  

It's such an unpredictable disease.  What have you gone through so far? If you feel comfortable, please do tell us some of how you came to diagnosis.

As for the meds, I've tolerated them fairly well.  The nurses that come out teach you  good techniques and with Rebif the needle was very thin - I've heard the same about Avonex. For me, the flu-like symptoms were not as bad as the flu.

I'm glad you found us, the one guarantee I can give is that we have wonderful people on our forum and you will receive warm welcomes, advice and lots of support.

Thanks for joining us!
-shell