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    Any Long-term Users Age 60+?

    Hi All,

    I'm curious if there are any long-term Avonex Users Age 60+ who are still maintaining Avonex tx? Do you plan to stay on tx after age 65+? If you switched from Avonex tx, why did you choose to do so (progression, needle fatigue, etc.?).

    I'll be turning 50 shortly, and am curious about my fellow long-term Avonex users. I've been self-injecting Avonex since September 1997 (dx May 1994), and despite a few mild relapses (2003, 2008) my MRIs have been stable. I've had slow progression (bladder, fatigue getting worse with age or MS?).

    But, presently, it's been nearly 20 years that I've been on Avonex tx and am curious who else is "with me" or has a similar story. Do you plan to continue indefinitely or stop at age 65?

    Thanks, in advance, for your input!
    Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

    #2
    Hi there - I'm rarely on this site but I saw your message and wanted to respond. You sound like me. I'm 49 and have been on Avonex since July 1997. I've done well on Avonex and consider myself very lucky, although I too have had progression with bladder issues and fatigue.

    For years, I waited for a non-injection to come out so I could be done with shots for good. After trying, and failing, Tecfidera, I went back to Avonex a few years back. At this point, I assume I'll be on Avonex until I'm done with all DMDs.

    Which brings me to this...my doctor is participating in a trial that is looking at whether MS patients, who are stable, can stop all drugs when they hit 55. He is hopeful the trial will prove this to be true, as he says MS progression slows to the point of almost ceasing at 55. The trial is being sponsored by MS research centers across the country, as pharmaceutical companies would clearly have no interest in this research.

    If the trial is successful, I will be off Anonex in 6 years. I am elated to think this may be the case.

    Anyway, just wanted to share my experience...and my hope. Sounds like we're kinda in the same boat, so here's hoping we're both headed the same route.

    Good luck to you...

    Comment


      #3
      I was diagnosed in November 2005. I started Avonex in January 2006, and have given myself a shot every week since then. In those years, I have never missed a shot, the reason being, I'm afraid not to take it.

      I was diagnosed at 55yrs. old, so if you do the math, I'm well past the 60 mark I see the neurologist in October and I'm going to discuss what the prospects might be for me. Is there any research that suggests stopping? My biggest problem is dealing with the Specialty Pharmacy that I use for the Avonex. They are without a doubt the absolute worst. Every single time I call for my refill, it's a problem...very stressful. I don't want to change pharmacies, because I'm fortunate that my copay is only $10 and I'm afraid to make any changes

      Since 2007 my MRI has remained unchanged. My issues are mobility issues with my right foot. So far, I have no major issues other than the right foot. I started using a cane in the house around 2011, and I have a mobility scooter if we go to large venues, or vacations, etc. I am thankful that I only have to deal with mobility issues. Honestly, for me, Avonex has helped with delaying progression. That is one reason that no matter what the Neuro has to say, and no matter how much I want to stop taking a shot every week, I would probably still be afraid to go off of the Avonex.

      Comment


        #4
        I am a long term us of Avonex, been on it since 1996. I don't mind the injections. They are little more than a minor inconvenience. Side effects are minor, just some occasional fatigue.
        My MS has progressed somewhat but quite slowly and has remained stable in recent years. I am able take care of myself.
        Frankly I am wary of going off Avonex and plan to stay on it
        Been taking Avonex since June 96
        For me Interferon therapy is essential in slowing MS down.
        Will continue with the weekly injections and take my disease one day at a time...

        Comment


          #5
          older Avonexer

          I realize this thread is very old, but in case someone new is interested, I am turning 65 in May and have been on Avonex 16 years. I want to continue as long as I can afford it. I will have a $600 copay per month if I chose a medicare plan that has Avonex covered. Great....I will have to go off. I've read that if you have Medicare you cannot get copay assistance. I have to research this further.
          The Rocky Mountain MS center has done long term studies on Avonex. You can read up on their site.

          Comment


            #6
            Sandman

            Originally posted by dm0329 View Post
            Hi All,

            I'm curious if there are any long-term Avonex Users Age 60+ who are still maintaining Avonex tx? Do you plan to stay on tx after age 65+? If you switched from Avonex tx, why did you choose to do so (progression, needle fatigue, etc.?).

            I'll be turning 50 shortly, and am curious about my fellow long-term Avonex users. I've been self-injecting Avonex since September 1997 (dx May 1994), and despite a few mild relapses (2003, 2008) my MRIs have been stable. I've had slow progression (bladder, fatigue getting worse with age or MS?).

            But, presently, it's been nearly 20 years that I've been on Avonex tx and am curious who else is "with me" or has a similar story. Do you plan to continue indefinitely or stop at age 65?

            Thanks, in advance, for your input!
            I have been on Avonex since May of 1999 I was just told to stop it this week was DX with stage 3a cancer I have had 3 bouts with cancer B4 2 bladder and one breast but now it is in the lymph nodes. So my MS meds have stopped radiation and chemo starts on 03/21/2019 VA is covering the cost trying to get 100% disability from agent orange and Have 30% from PSTD right now not sure if this helps you any but Good Luck

            Comment

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