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

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

    Hello,

    I've been on Avonex about 10 years(maybe a year or so less... I was on Betaseron before that...) and I'm thinking of quitting Avonex and NOT going on any of the MS drugs, they are all way too expensive! I don't have any problems, no flair ups, nothing... It's as if I don't have MS except that my brain MRI shows the same white spots since 2001 but I have no symptoms. I was thinking of going off for 6 months and see what happens, I'd like to get off of it for good...

    My question is, has anyone gone off Avonex/MS drugs and been ok after quitting?

    Thanks...

    #2
    No one knows what will happen. There are two schools of thought:

    1) You seem steady, you could go off drugs, you're probably OK

    2) It's working, why mess with success.

    But your reason doesn't make sense. Can you not get copay assistance? I pay only $10 copay for my avonex. The manufacturer pays the rest. How much do you pay?

    Comment


      #3
      YES!
      I was on Avonex for 12 years steady.
      Also changed my diet, exercise, lifestyle, everything.
      Still felt like poop.

      Quit the Avonex 3 years ago... I still have MS but I feel better without it.

      Is this a smart choice? Time will tell.

      Am I perfectly comfortable and confident in my all natural treatment choice? No but I feel better and don't have to deal with the side effects and expense etc.

      I am also not real comfortable with any of the other DMD's and questian the safety of taking them for decades.

      It seems to be a case of choose your poison.

      Comment


        #4
        Thanks for the reply, this has been bothering me for a while now...

        Originally posted by BigA View Post
        No one knows what will happen. There are two schools of thought:

        1) You seem steady, you could go off drugs, you're probably OK
        That's what I want to find out and there is only one way to know for sure...

        2) It's working, why mess with success.
        And that's what I struggle with... And then there will be a few people that won't like it if I go off the drug, I struggle with that too...

        But your reason doesn't make sense. Can you not get copay assistance? I pay only $10 copay for my avonex. The manufacturer pays the rest. How much do you pay?
        Currently I pay $60.00 per month. Now with the new ACA law for 2014, I can no longer carry my own single group health insurance plan. I work as a self employed contractor and I have no employees, because I have no employees I can't stay on a group plan anymore because of the new law. Now that I'm getting kicked off of my group insurance in 2014 because of the new law I have to go on an "individual" health insurance plan which isn't the same as a group plan when it comes to drugs, not even close.

        When I looked into it the best I can find is I will be paying almost $2,500.00 per year on top of my health insurance premiums. With the average individual health insurance plan I would have to pay just over $5,000.00 per year on top of the health insurance premiums. When I started Avonex it was around $20,000.00 per year. I was shocked to recently learn that it now costs over $50,000.00 per year. I'm pretty angry at the whole thing including Biogen for raising the price so high.

        I will try to get on the $10.00 co-pay program from Avonex but I think I will get rejected. If I get rejected I plan on quitting. It's as if I'm told I have to buy a Corvette every year to go to work and I don't have a choice or a say and I have to pay them what they tell me to pay, so I want to fire Biogen, if I can... I don't want to be a slave to them anymore.

        It's great that they are making all these new breakthroughs all the time but they need to make a breakthrough on the price of some of these drugs and bring the cost down to a reasonable price!

        I have an MRI scheduled and I will talk to my Neurologist (who will be one of the few that won't like it) before making a decision. I was thinking of getting an MRI done about 6 months after being off the drug to see if there are any changes...

        Thanks for the reply

        dw

        ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

        Comment


          #5
          Thanks for the reply.

          Originally posted by tommylee View Post
          YES!
          That's great to hear!

          I was on Avonex for 12 years steady.
          Also changed my diet, exercise, lifestyle, everything.
          Still felt like poop.

          Quit the Avonex 3 years ago... I still have MS but I feel better without it.
          Thank you for letting me know your experience going off of Avonex, I'm glad you're doing well without it. I may give it a try next year but I have a few months to give it a lot of thought before making that decision...

          Is this a smart choice? Time will tell.
          That's the thing, you won't know unless you try...

          Am I perfectly comfortable and confident in my all natural treatment choice? No but I feel better and don't have to deal with the side effects and expense etc.
          The cost got out of control the last few years...

          I am also not real comfortable with any of the other DMD's and questian the safety of taking them for decades.
          That's another thing I didn't bring up, I'm not comfortable not knowing the long term negative effects that they don't know about.

          It seems to be a case of choose your poison.
          I've been thinking the same thing.

          Thank you for letting me know your experience.

          danw

          Comment


            #6
            Originally posted by danw View Post
            Currently I pay $60.00 per month. Now with the new ACA law for 2014, I can no longer carry my own single group health insurance plan. I work as a self employed contractor and I have no employees, because I have no employees I can't stay on a group plan anymore because of the new law. Now that I'm getting kicked off of my group insurance in 2014 because of the new law I have to go on an "individual" health insurance plan which isn't the same as a group plan when it comes to drugs, not even close.

            When I looked into it the best I can find is I will be paying almost $2,500.00 per year on top of my health insurance premiums. With the average individual health insurance plan I would have to pay just over $5,000.00 per year on top of the health insurance premiums. When I started Avonex it was around $20,000.00 per year. I was shocked to recently learn that it now costs over $50,000.00 per year. I'm pretty angry at the whole thing including Biogen for raising the price so high.

            I will try to get on the $10.00 co-pay program from Avonex but I think I will get rejected. If I get rejected I plan on quitting. It's as if I'm told I have to buy a Corvette every year to go to work and I don't have a choice or a say and I have to pay them what they tell me to pay, so I want to fire Biogen, if I can... I don't want to be a slave to them anymore.

            It's great that they are making all these new breakthroughs all the time but they need to make a breakthrough on the price of some of these drugs and bring the cost down to a reasonable price!

            I have an MRI scheduled and I will talk to my Neurologist (who will be one of the few that won't like it) before making a decision. I was thinking of getting an MRI done about 6 months after being off the drug to see if there are any changes...
            OK, slow down. Have you actually contacted Biogen? From what I understand, you're paying $50 too much now anyway. No one would really use Avonex if they paid full price, so don't worry about Avonex raising their prices. At the end of the day, unless you have a *very* good salary, you won't have to break your bank. But give them a call to be sure you know if you really need to worry financially.

            I've been on with my insurance carrier and it's confusing. I suppose this is the sacrifice we make so that others like us will never have to worry about being insured or not.

            Call Biogen.

            Comment


              #7
              Originally posted by BigA View Post
              OK, slow down. Have you actually contacted Biogen? From what I understand, you're paying $50 too much now anyway. No one would really use Avonex if they paid full price, so don't worry about Avonex raising their prices. At the end of the day, unless you have a *very* good salary, you won't have to break your bank. But give them a call to be sure you know if you really need to worry financially.

              I've been on with my insurance carrier and it's confusing. I suppose this is the sacrifice we make so that others like us will never have to worry about being insured or not.

              Call Biogen.
              I did call Biogen, they told me they can't do anything until I get my new insurance in place, which does make sense. I hope to have a new insurance plan in place in the next week or so, then I will give them a call and go from there.

              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.

              The reason why the cost makes me so mad is the cost of the drug is the whole reason why it's a Tier 4 drug which makes it really expensive for any individual insurance plans. I think it's a matter of time before it becomes really expensive on group plans as well.

              I will see what happens when I get my insurance plan in place. I should know what will happen for next year by the end of this year...

              Comment


                #8
                Give it a try. I've got my new plan laid out and am checking with Avonex to make sure it works. Here's my ACA experience:

                1) Since the government was involved, Biogen told me they were unable to pay my copay.

                2) Last week, however, the government specifically announced that pharmaceuticals would be able to pay.

                That means we can take an ACA program and still get our copay assistance.

                Comment


                  #9
                  **** DanW ****

                  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!

                  Comment


                    #10
                    So expensive!

                    I just got a call Thursday, I'm approved for copay assistance. Wonderful! On Aetna, the Pen for 3 mos (13) is $61k, my portion is 25% after the deductible. Tier 5.
                    I could hardly believe how much the price has increased.

                    Comment


                      #11
                      Did you try the Chronic Disease Fund?

                      Originally posted by danw View Post
                      Thanks for the reply, this has been bothering me for a while now...



                      That's what I want to find out and there is only one way to know for sure...



                      And that's what I struggle with... And then there will be a few people that won't like it if I go off the drug, I struggle with that too...



                      Currently I pay $60.00 per month. Now with the new ACA law for 2014, I can no longer carry my own single group health insurance plan. I work as a self employed contractor and I have no employees, because I have no employees I can't stay on a group plan anymore because of the new law. Now that I'm getting kicked off of my group insurance in 2014 because of the new law I have to go on an "individual" health insurance plan which isn't the same as a group plan when it comes to drugs, not even close.

                      When I looked into it the best I can find is I will be paying almost $2,500.00 per year on top of my health insurance premiums. With the average individual health insurance plan I would have to pay just over $5,000.00 per year on top of the health insurance premiums. When I started Avonex it was around $20,000.00 per year. I was shocked to recently learn that it now costs over $50,000.00 per year. I'm pretty angry at the whole thing including Biogen for raising the price so high.

                      I will try to get on the $10.00 co-pay program from Avonex but I think I will get rejected. If I get rejected I plan on quitting. It's as if I'm told I have to buy a Corvette every year to go to work and I don't have a choice or a say and I have to pay them what they tell me to pay, so I want to fire Biogen, if I can... I don't want to be a slave to them anymore.

                      It's great that they are making all these new breakthroughs all the time but they need to make a breakthrough on the price of some of these drugs and bring the cost down to a reasonable price!

                      I have an MRI scheduled and I will talk to my Neurologist (who will be one of the few that won't like it) before making a decision. I was thinking of getting an MRI done about 6 months after being off the drug to see if there are any changes...

                      Thanks for the reply

                      dw

                      ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
                      Chronic Disease Fund phone number:1 (888) 470-4146. Good Luck!

                      Comment


                        #12
                        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. .

                        Comment


                          #13
                          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!
                          Hello,

                          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.

                          Dan

                          Comment


                            #14
                            I was diagnosed in Dec-99 and started Avonex in Jan-2000. I was on it consistently through 2013. I had a few flares throughout the years but I recovered fully from all of them, and I didn't have any flares between 2006-2012. MRIs were stable through the years.

                            In 2013 I started seeing a new neuro because my old neuro moved to NY. The new neuro told me that after ten years that Avonex loses its effectiveness, so I stopped. In the beginning of 2014 I experienced the worst flare of my life. Thankfully I have fully recovered from it but it was rough.

                            Did stopping Avonex cause this? I guess I will never know but I think the adage that Avonex stops working after 10 years is BS.

                            It works differently for everyone so stopping it may be OK for you. I guess you'll never know until you try. Just proceed with caution.

                            Comment


                              #15
                              Hi cremmins,
                              The new neuro told me that after ten years that Avonex loses its effectiveness, so I stopped. In the beginning of 2014 I experienced the worst flare of my life. Thankfully I have fully recovered from it but it was rough.
                              I've never heard this, and know someone who has been taking Avonex for 17 years. I'm glad to hear you've recovered from your flare! I would be looking for a new neuro.

                              Best wishes,
                              Kimba

                              “When you change the way you look at things, the things you look at change.” ― Max Planck

                              Comment

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