H-E-L-P!! On Avonex 17 years…. thinking of QUITTING.

[PJ Bahr]

Hi everyone!

I am soooooo happy (and relieved) to find this forum tonight! Wow, I had no idea this existed/was available. GREAT!

As stated in the title of this post, I've been on Avonex for 17 years and have R/R MS.

This month our employer changed insurance providers and I was notified that my copay will now be almost $300/month.

Due to that I am considering quitting Avonex. I've contacted Biogen and the jury's still out on whether or not they will give any financial assistance to me.

My QUESTIONS are:

Has anyone here gone off Avonex and if so, how long ago and how are you doing since quitting it?

Did you choose an alternative MS therapy or just not on any of the interferons?

Did you quit "cold turkey"??

How soon after quitting Avonex did you notice an improvement in your moods/attitude/disposition??

Any knowledge of Tsybari and/or advice about that?

THANK YOU TO EVERYONE for reading these questions and any information you can share with me at all.

This is such a scary move to consider after having been on Avonex for so many years.

[Marco]

PJ - welcome to MSWorld!

I am glad that Avonex served you well for 17-years. When you first made the decision to go on Avonex treatment choices were limited. Back then, we argued about the number of weekly shots we would have and debated how much better 33% efficacy was compared to 36% efficacy. Today, we have so many options and many of them are far better than before. In fact, without your wonderful Avonex track-record it would be hard to suggest you remain on it.

Moving to another interferon (Betaseron, Extavia, Rebif) you are essentially just increasing your shot frequency and weekly dosage of the medication. Switching to Copaxone would increase your injections from weekly to daily, but offer some level of neuroprotection with similar efficacy. Most people simply stop taking their injections cold-turkey. If you are having interferon-induced depression you should get some relief in less than two weeks. The process to start another medication will take from several days to a few weeks. Aubagio would give you a similar level of efficacy (a bit better Avonex) and trade weekly injections for a daily pill.

Gilenya and Tecfidera (both orals) will up the statistical efficacy over 50%, but may have more significant side effects than Avonex. Many patients have successfully transferred to these medications without issues and have permanently sworn off sharps containers. Tysabri is definitely a heavy-hitter, but comes with the potential for the most serious side-effect possible. There is certainly an argument to be on the strongest and best treatment available, but with minimal MS activity a medication with less significant side effects might be indicated.

Unfortunately, there is no way to predict how your body will react to a different medication. I would have a hard time moving away from a medication that was effective for so long. I would certainly call MS ActiveSource and let them know that money and only money is preventing you from maintaining on Avonex. They also need to understand you are looking at all alternatives to Avonex and not just Biogen medications (Avonex, Rebif, Tecfidera and Tysabri).

I hope you will continue to let us know about your situation, ask follow up questions and what eventuak decision you make. More than anything, I wish you well ...

[PJ Bahr]

Marco! Thank you!!!

Marco!

Thank you so VERY much for your educational, heartfelt, sincere, encouraging reply!!!!!

I really, really appreciate all the information you've provided to me!

I'm hoping to hear back from Biogen tomorrow and see what they intend to do: something or nothing. :-/

Last night I spoke with a girlfriend who was diagnosed with MS a few years ago and one year ago she had the CCSVI treatment in San Diego and is doing remarkably well.

I don't know that I'm game for that of course, as right now my immediate issue is to stay on Avonex or not. Thank you too, for your suggesting that I call MS ActiveSource and in fact, that may very well be who I've been speaking with vs. Biogen. I need to double check all my handwritten notes about it.

THANK YOU AGAIN!!!!! So very much!

[Camsue]

Hello PJ Bahr

Welcome!! that is so brave of you to switch... I will be very interested in how you are doing. I've considered it several times and after 19+ years of injections and site reactions, I would love to stop.

I just can't ignore the positve, the benefits. My side effects and my sxs have greatly lessened. My co pay remains under $50.

Please keep us informed on your decison and how you react to it. I have never read any data on people making the switch after many years...They should do a study!!

Take care

[tommylee]

I am not comfortable giving advise about medications but I will tell you my experience.

I was on Avonex for over a decade and just got tired of the side effects and jumping thru hoops to pay for it.
For the past five years I have been trying an all natural approach (diet focused).

The latter feels much better but takes more personal effort.
(I have to cook almost every meal I eat.)

I seem to feel better and be doing alright with the diet and exercise program but there is no way to know what is best.

It has been very nice not taking any shots and never stressing about getting my meds or dreading the side effects.
It started for me as a "drug holiday" when I was struggling to pay for it and by the time my funding was approved I decided I liked life without Avonex better.

Was it a wise choice to dump Avonex and not start another DMD??? I will never know. (but today I feel better without.)

My MS seems to be just as stable without Avonex but one mans experience is not a study group.

Good luck. This can be a tough call. It is your life.

[Don2480]

I was never on Avonex but rebif for awhile. I think it is great that it worked well for you this long...Personally it would be hard for me to switch.

I am currently on tec without any ill effect. The results from clinic trials and the fact that it seemed the least scary of the orals lead me to tec. What is scary about tec is the fear of the unknown,,

From the patient assistance I think that the only requirement is private insurance....10 dollars... We may have differnt reactions though as rebif= same drug higher does. did not work for me at all. flu like after every shot


good luck...I wish you a cheap and swift resolution

[from2344]

I don't have any answers for you but I can tell you I am taking avonex and I pay only $10 per month. I do have private insurance through my husbands employment but I was told by the Avonex nurse if I was to ever lose that insurance not to worry cause there is a $10 and $25 co-pay program that's offered.


Best of luck in whatever you decide and I hope either way you go you ave success.

[BigA]

Call biogen and be persistent. They will definitely sort you out so that you're only paying $10. Biogen has one of the most generous patient programs around. They've paid $1000's so that I don't have to.

[andi b]

I was able to get the copay assistance from Biogen

when my insurance changed and my deductible and Rx cost went up. My copay under the assistance program is $10 per month!

However, when I turn 65 in 18 months, I will have to go on Medicare (and the copay from Biogen will no longer be offered). At that point I don't know what I'll do if Medicare doesn't cover a huge portion of the cost.

Does anyone know what portion of the cost Medicare covers for a specialty drug like Avonex? I guess it depends on the prescription plan you choose, but is there any ballpark figure out there?