Boy, can I relate to your post! I had been self-injecting Avonex for twenty-five years (since September 1997 until March 2022). I was dx in 1994 at age 26, only Betaseron tx via lottery back then.
My follow-up MRI in 1997 showed substantial silent progression. My neurologist said to start Avonex ASAP. But, besides Betaseron, Avonex was the only tx available in the US at that time. So, I stuck with Avonex (and the IM injections for as long as I could).
Over the years, I had a few mild flares (ON in 2003 and left-side numbness in 2007) but all of those flares were during extremely stressful times, and my MRIs had been stable since starting Avonex way back in 1997.
Due to needle fatigue, after starting Menopause in 2022, I switched to Aubagio 14 mg. I enjoy the simplicity of a once-a-day pill, and the side effects are minimal. So, I am happy about my choice to switch my DMT to Aubagio.
Although my neurologist has suggested possibly stopping my tx at age 60, I am not sure about that. As many MS specialists say that MS is a chronic, progressive and life-long disease. Sure, folks with SPMS may have a lower response to some DMTs, but treatments are "for life." And I am only 56 currently.
I'm certain that many other folks here will respond to your post too. It's a personal decision, and I'm "not there yet" as I will stay on my treatment until age 65, after that I will "see what's out there" and what folks are saying at that time.
"Silent progression" was my neurologist saying that there were substantial changes from my first MRI (1994) to my second MRI (1997). The changes were "silent" meaning no outward signs; I wasn't aware of how active my MS was after all.
But, back in 1994, only Betaseron was dispensed via a lottery. When I was dx at age 26 in 1994, it was basically "diagnose and adios." I was told that young women tend to do very well with MS and that there was no reason that I needed to see a neurologist regularly (boy, how things have changed, right?).
"Silent" meaning that all of the "changes" on my MRI did NOT make "noise" or alert me of a flare or noticeable changes (they were silent) meaning that the changes were seen on an MRI but didn't alert me of my MS activity.
As told to me when I was first dx, MS is like an iceberg meaning what you see is "just above the surface" while more is brewing under the water (only seen with an MRI). Silent=no overt signs. Again, that was May 1994 until May 1997. I was told was "lucky" three times, and to start Avonex as soon as possible, which I maintained for 25 years. Avonex hit the US market in 1996; I started in September 1997.
Due to needle fatigue, I switched to Aubagio in 2022, my first year of Menopause too. After 25 years, I was done with the IM injections, so I went on Aubagio, as my MRIs had been stable on Avonex, but I am only 56 and, as we know, MS is a chronic lifelong condition.
I'm 58, stopped my DMT October 2022, had my MRIs September 2023, and having my Neuro appointment November 29th. Fingers crossed🤞I read the reports, and it doesn't look like anything is new.My walking is getting worse, off balance most of the time but, that's what my cane is for. 🎃
I was diagnosed at 29 in 1985. I am still doing well. I was on Betaseron for awhile, then switched to Avonex quite a few years ago. New neurologist agrees with the age/ decreased immunity theory and said as I have been stable for years she would be fine if I quit Avonex. Without thinking I came off it cold turkey in April of this year. Then I found out it is controversial. I have had more symptom in the last 5 years, nothing too bad and all manageable. I have been attributing that to age. Cold turkey - well, I felt an increase in some things, but I was hyper aware, noticing every little thing. I am going to talk to my neurologist about having an MRI just to ensure all is well. Stopping is a difficult decision, good luck.
I had been on injectable DMT's for decades including Avonex. Then on Rebif, with my neuros looking for a better working drug, I started having flu-like symptoms full time related to each injection. 2+ years later I was told to stop. Saying that life like that wasn't good. And that the DMT'S were obviously not helping. When I stopped, the need for other drugs also stopped. I have been on no drugs since, and haven't had a relapse since. I still have lots of m.s. things from many relapses over many years. But good.Got off cold turkey, no problem.
Hi scoutman l personally <~( notice personally🙂) feel that there should be alot more involved than age! Im 58 just turned, 🤣 and there is no way my Neuro will let off a DMT. But Everones MS is different!
You should check out your MRI 1st and see about progression there! 🤗💕🌠
I agree with this. I think they take how active your MS has been into consideration. I don't want my doctor to go only by my age. My situation is different having PPMS so can't really compare. Relapse at any age impacts quality of life.
I’ve been off of avonex for two years now after taking it for 26 years. I don’t miss the shots and my MS, based on my MRIs and no exacerbations has remained stable. I have been lucky and have had no flare up’s since my first episodes when 1st diagnosed, so I was a good candidate for stopping my meds.
You can always go back if you feel any changes in your body after going off, and there are so many wonderful medical options available now that were not when you started on avonex.
I have heard similar; "aging out" kinda! The disease stays still in a sense unless occurrences trigger an episode. My. MRI's have been stable for years, I still can feel if I over do it, but (🙏) nothing infusion worthy. I'm on Copaxone and truly tired of the needles 3x per week; slight fear of the "what if" is in the back of my mind. I wonder how extensive of a study has been done with older MS in correlation to their meds and length of stable health? I would like to know. Very interesting concept. Peace and Blessings. NeeC
I would also like to know! Part of the theory for coming off is that drug research has been done on under 55 years old with no comorbidities. I think the feeling is that nobody knows about the drug use in older people. It just adds to the confusion when trying to decide to stop.
I was on avonex for about 2 years around 2012 to 2014 but it started messing with my thyroid so I stopped taking it, then went on tecfidera which I was on for a few years then it messed with my blood count then on to aubagio which I have been on for between 4 and 5 years, I have not talked to my doctor about stopping my meds and he has not brought it up either, I am almost 67, so I will keep taking my meds until the topic comes up, good luck with you on which ever way you go !
I've been keeping an eye on this question for a while. I was on Avonex for 3 years, then on Copaxone for another 3 years, then went 10 years with no MS drugs, and now am on Glatopa (= Copaxone) for nearly 3 years now. I've noticed that the experts were saying for a while that people over a certain age (65?) could stop DMDs because there wasn't much evidence that at that age the DMDs were helping. But more recently they've been rethinking that. I recently noticed this--it's an abstract but the authors have "no conflict of interest" and therefore probably aren't just promoting their favorite DMD. I'm not sure that this link will be clickable but you can copy and paste the URL into a browser's address window:
The title is "Impact of adherence to disease-modifying drugs in multiple sclerosis: A study on Italian real-world data." It doesn't deal with the issue of age but concerns whether stopping a DMD versus continuing on a DMD has an effect on relapses.
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