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Anyone doing ok after quitting Avonex and NOT switching to another MS Drug?

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    Avonex no longer working.

    It is a fact for "some" people that Avonex stops working. I unfortunately after 17 years of it have come to that. An antibody blood test will tell your Dr that. I don't know where or what I will be given now but it does stop helping some people.

    Have a great day!


      Originally posted by paperchic2001 View Post
      It is a fact for "some" people that Avonex stops working. I unfortunately after 17 years of it have come to that. An antibody blood test will tell your Dr that. I don't know where or what I will be given now but it does stop helping some people.

      Have a great day!
      I think what you're talking about is neutralizing antibodies to interferon, which is not exactly agreed upon. Firstly, Avonex has the lowest probability of antibodies of the interferons (all shots except copaxone are interferon). It's not clear, however that having neutralizing antibodies means the medicine won't work any more or that the next time you test, there will still be high levels of antibodies.

      Every medicine continues to work until it doesn't. Even this is hard to tell. If you were on avonex and had a big exacerbation after 10 years, is it working? 1 exacerbation in 10 years is very few, so maybe it still is.

      I have my shot tomorrow and I wish I didn't have to... but I reckon if it's lowering the possibility of progression, I owe it to myself.


        I stopped Avonex...then had a relapse

        I was on Avonex for less than a year. It worked fine, negligible side effects. Then my neuro and I decided to stop because he thought the MS diagnosis was incorrect.
        So I stopped in Oct 2012. I had a relapse in Feb 2014. This relapse confirmed an MS diagnosis, new lesions. I am planning on resuming Avonex.
        I quit because i got scared of the needle overtime. I would tense and the shot would hurt. Could I have prevented new lesions and a relapse if I had stayed on Avonex? I dont know.
        I guess my advice, other than to do what you feel is best for you, would be to monitor your Mri's and relapses. That way if you have a relapse-you can decide if the cost benefit is worth paying for / coping with a DMD.
        My motto is more along the lines of better safe than sorry. But everyone is different.
        Good luck!
        ~seeuinct (Connecticut)
        Dx the first time: 10/25/11
        Avonex 1/12-10/12
        Revaluation of Dx 10/12
        Rediagnosis 7/14


          Over ten years I have had some period without a DMT. Usually it was because Christmas was coming. I tried Tecfidera and it was a disaster. Now I am on nothing again and waiting for Plegridy. I am very much like Tommy Lee in my handling of my MS, but being on nothing for these increasingly longer periods is kind of scaring me. Nothing has happened though. I stay kind of "Yuck" at all times, but did with Avonex too. I could be worse though God knows...
          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994


            I am still thinking about quitting Avonex. If you're on Medicare your screwed! High cost with NO relief because you're on a government program, seems backwards to me!! I thought the government was all about saving money! It costs me over $3K out of pocket initially then about $235/month! Very discouraging!
            Diagnosed RRMS 1985
            Tysabri 5/07-3/10: Avonex 8/10


              Scampergirl, I am on Medicare and paid 0$ for avonex as it is covered if you have it administered at a clinic or your doctors office. My supplemental insurance picked up the 20% Medicare does not cover so if you want to be on Avonex that is how you do it.

              Incidentally I started to have all sorts of problems with Avonex quit it 5 years ago and feel no different. Yes I have progressed a little but I progressed on it as well and progressing is what ms tends to do anyhow.



                Thank you so much for the information! Now, can you give me direction on where to start this process? Thank you!!
                Diagnosed RRMS 1985
                Tysabri 5/07-3/10: Avonex 8/10


                  I have been on avonex pen for about 9 months. Was previously on copaxone pen. Had to many severe reactions to the copaxone.
                  Does or have any of you experienced a burning heat in your torso, arms and head while on avonex.?


                    You need to find a doctor/clinic who is willing to "buy" the Avonex from Biogen, give you the shot at their clinic and then bill Medicare for it to get reimbursed.

                    Easiest way would be to simply call Biogen and ask them. They know all about it. I found a clinic I had never used before willing to do it as my neurologist was not set up for it. The difficult part is to find a clinic willing to do it as there is nothing in it for them, but they are out there, not all are having $ signs on their doors.


                      Originally posted by PJ Bahr View Post
                      DanW, you said:
                      "My worst case scenario is I go off the drug. I was thinking if I go off the drug and I don't have any problems then that may just turn out to be the best case scenario."

                      OMG that is EXACTLY where I'm at!!!! I've been on Avonex 17 years and have never missed an injection however…….. our employer changed insurance providers as of 01-01-14 and I have been notified MY portion (copay) will be $276/month.

                      No way can I swing that so I told the speciality med provider I was going to go off the Avonex and they recommended I call Biogen.

                      Last week I called Biogen and answered questions for them and was told I'd be receiving a response phone call in 5 business days to determine if I could expect to receive any financial assistance.

                      If not, I'm going to bail on the Avonex. Like YOU said (which I LOVE) - - - maybe it's not a bad thing to go off for awhile as long as there are no BAD side effects from going off of it.

                      Looking forward to any other replies here. Thanks for posting this initially!
                      Hi...I am thinking about going off of Avonex due to the cost. What did you end up doing?



                        Big A why do you say as long as you are not on Medicare you should not pay more than $10. ?

                        QUOTE=BigA;1442865]No no, please. Even if you do not have insurance, biogen will still send you meds. My insurance was taking too long and I called biogen and they sent me 1 pen free. You'll still need to get your doctor to send a new prescription to biogen's pharmacy, but you will get meds - for as long as you need.

                        As long as you're not on Medicare, you should not pay more than $10.00/month.

                        If you are between insurances, biogen will send you meds free - even if you are working with a good salary, self-employed, etc. .[/QUOTE]



                          This is an older thread, but I took some of your advice and called Biogen to see if they could help me beginning Jan. 2016. I explained that I want to cancel my Medigap supplemental policy in January due to the cost.

                          She was nice but could not give me any definite answers until AFTER my supplement policy was no longer in force.

                          She assured me that there would be assistance for me regardless of income.


                            HI Dan
                            I know this is an older thread but I was wondering why you say Biogen won't help with the cost if you are on Medicare.
                            Thanks, Ginny

                            Originally posted by danw View Post

                            First I would like to say CALL BIOGEN if you need help with the co-payments! It turns out that they REALLY WILL HELP with the co-payments regardless of your income! This is what I learned in my situation. (Please read more to find out what I learned)

                            Here is and update and what happened in my situation, I hope this helps others out there...

                            I called Biogen to see if I can get on the $10.00 co-pay program. When they asked my "household income" I told them, then they said I don't qualify (which is what I was thinking all along). Then I told them I will be going off the drug. Then they put me on hold for a minute, when they came back they said they have another $10.00 co-pay program for those whose household income is too high to qualify, the only difference is that they will pay up to $10,000.00 per year of co-payments on that co-pay assistance program. That should cover the cost of the co-payments for "anyone regardless of income" no matter how high the household income. They told me that it was up to me if I felt I needed the help with the co-payments. It was VERY EASY and I didn't have to give any paperwork.

                            What took so long for me to get on the $10.00 co-pay program is I needed to have a health insurance plan in place for 2014 BEFORE Biogen could help with the co-payments. Even though I signed up for a plan in 2013 for 2014 I had delays from the insurance company on getting things going. I did have three boxes of Avonex during that time so I never ran out. As far as if you don't have insurance, I don't know anything about that and how that works...

                            I'm still not happy about the extremely high cost of the drug but with that said, I will say that Biogen bent over backwards to help me out with making the drug affordable at the co-pay level for me.

                            I would say if you are in the same situation as I am in, call Biogen, they really did help me out, more than I thought.

                            I would like to point out though that the high cost of the drug (and others like it) does make "everyone's" health insurance premiums higher!!!

                            Thanks for all the replies. I wanted to give an update of what happened and that I am now on the $10.00 co-pay program. My co-pay for the drug is less than $10,000.00 per year so I should be ok, for now... I have no idea what will happen when I turn 65 17 years from now...

                            I do want to say again to CALL BIOGEN if you need help with the co-payments! It turns out they WILL help no matter what your income is as long as you have insurance and are not on medicare, medicaid, VA or DOD.

                            I hope this helps someone.



                              Originally posted by GinnyRuth View Post
                              I know this is an older thread but I was wondering why you say Biogen won't help with the cost if you are on Medicare.
                              Hi GinnyRuth:

                              Medicare contracts for prices with all of its suppliers -- medical practitioners, hospitals/clinics, pharmaceutical companies, equipment suppliers, insurance companies that provide Medicare Advantage plans, etc. -- for whatever service or product they supply. It's a violation of the contract for those suppliers to then undercut in any way the prices they charge to the purchasers covered by the contract (in this case, Medicare enrollees).

                              That means that it's a violation of the contract for the pharmaceutical companies with Medicare contracts to discount or give the drugs away free to anyone covered by Medicare. (Violation means illegal.) So Biogen can't, by contract, help Medicare enrollees with the cost of Avonex -- unless they qualify for assistance under special programs.

                              Assistance for drug costs for Medicare enrollees is based on a percentage of income related to the federal poverty level (and some rules for assets), not on a different level of hardship or inconvenience.

                              This is the page from the Medicare website with information about Part D drug costs (including the Extra Help program):

                              This is the page from the Medicare website that introduces the Pharmaceutical Assistance Program:


                                Thinking of switching to oral med

                                Hi, I'm a newbie on here. I have been on Avonex since 2003 and doing well. No relapses. Now my insurance only wants to cover Rebif or an oral. Sure I would love to try an oral med, but which one. I think my doctor will help me decide. I think he may suggest Aubagio. I have done really well on Avonex with not that much to complain about. But the thought of getting on an oral is really a nice alternative. I've been reading alot of views from others but everyone is different so its hard to judge how your body will tolerate a new med until you try it, so it seems. Any response would be very much appreciated. Thankyou!