Hi, I am new here. I came because things are changing In My MS treatment. I am 62 years old, diagnosed with MS in Nov 2003. Recently, I read an article about a neurology conference about the need for disease modifying treatment as we age. When I saw my neurologist 2 weeks ago, I mentioned it to her and she agreed that I could stop my Copaxone. I have been on it for 15 years and have not had a significant relapse since 2007. I have had minor ones, though.
So, I got a “baseline” MRI of my brain off treatment and have a neurocognitive test scheduled. I am connecting with this community to see if any other seniors have stopped their meds and what was the result?
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Mssailor
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There doesn't really seem to be a consensus about this issue, but I'd go with your gut feeling and what your doctor recommends. Will you be allowed to restart treatment if you should (God forbid) have any relapses?
Whatever you decide, we fully support your decision.
also new to this site. now, 71/diag1991 never did go on to any ms drug since not much around at that time. started fampyra. walking drug a year ago which has helped - just trotting along with the occ relapse helped from high steroid iv sessions. last jan was first major relapse=first hospital stay - did cause a bit of slide however basically neurologist stated a drug, at my age/stage, would? side effects which would be not worth it.so healthy diets
Thank you for posting this. I am 67, was diagnosed in 2003, and also take Copaxone. I, too, have been wondering if I can stop treatment. I have done very well on Copaxone but I am oh so tired of injecting. I look forward to responses to your post.
If you are doing well it could very well be the Copaxone? Maybe look at changing to one of the oral DMT’s? I have been on Aubagio for eighteen months and doing great 👍 last two MRI’s were stable and no new lesions 👍. I was diagnosed twenty three years ago and have been on seven different DMT’s thru the years as they quit working and new ones came out. I started on Copaxone in 1996 and was on it for twelve years till I started having relapses then changed. Hope this helps you with your decision? 🙏🐾 Ken
she who must be obeyed is early 50's and has been on Copaxone for years has an MRI that has no changes and no attacks, Her neuro says unlikely to get any, for what that is worth.
Hi 👋 and welcome. I agree with greaterexp that you should listen to what your gut is telling you. I am 62, I have PPMS, never been offered. DMT, so I just live each day as it comes, blessings Jimeka 🦋
I started on Copaxone when I was 61, & haven't had a relapse since. I am now 76. Neither my neurologist nor I see any reason to change or stop this DMT.
I'm 65. Diagnosed in 2007 with PPMS. Was on Rebif and Copoxane with negative results from both. All other DMT's they offer me carries the PML risk, no thanks. My neuro thinks there's no reason to take anything.
I’m turning 60 in 2 mos. My neuro gave me the ok to stop my DMT because of my age, no MRI changes and stable disease 10 yrs ago. I was on copaxone. Unfortunately, my symptoms crept up on me (still no MRI changes).in sept I started Ocrevus and have had remarkable results. Everyone is different. Just be self aware and don’t let age be the determinant.
Mssailor Welcome to the forum, an amazing family of MSers. I am a senior (very). I was diagnosed at 70, eight years ago, and have never been on a DMT. The reason given was that DMTs were not trialed on seniors, so there were no statistics one way or the other. I do know that I have had adverse reactions to one dose of Ampyra and the senior flu vaccine. Both caused dizziness/disorientation that lasted for close to 48 hours. My immune system apparently has enough to do without being over stimulated.
Despite the many lesions on my brain & spinal cord (cervical and thoracic), all my exacerbations, with the exception of optic neuritis, occurred prior to diagnosis. Now, they don't last long enough to be deemed "real" (though they are real to me, they are labeled pseudo, an offensive term.) I think my cognition is more or less intact (though others may be less sanguine about this than I!) I have noticed that I no longer deal well with crowds, traffic, noisy environments, and stressful circumstances because my brain seems to go into a quiet room and shut the door...but whether or not this is MS or age related, I dunno. I am a firm believer that you know more about the body you dwell in than most neurologists, so I would encourage you to trust yourself...and verify!
Rebif and Avonex were my DMTs for 17 years. I’m 72 years old and quit the shots 10 months ago. No big problems being off the drugs. Over the years I have morphed into secondary progressive MS and my symptoms have slowly worsened. I do have a Baclofen pump so i’m still able to exercise, swim, drive, etc. My balance, foot drop, weakness in the hip flexors, are my biggest problems. I do get out and about but use a ca;e or my walker to keep me safe. Good luck making your decision.
Glad you are doing well on your treatment. I’m 66 and have talked to my dr about this too. I would love to stop some of my treatments yet there is always the question “what if”. I agree with others here and say go with your gut. Good luck 🙏🏽👍✌️
I'm 62 and was diagnosed in 2004 with ppms. Started with Novantrone (4 doses). Then was on Copaxone for about 12 years. I recently finished one year of Ocrevus, but my insurance has now denied it. I now am off DMT's, but still need baclofen and diazepam for spasms. Pray all works out for you 🙏. This a great site for asking, venting or giving/getting feedback from people that understand!!!
I am 63 diagnosed in 2005. Started on Rebif then Copaxone 20mg, then Techfedera, then back on Copaxone 40mg. I couldn't take the injections anymore so I I opted to try Ocrevus. So far I have had remarkable results. My legs work much better than they did before & I have a feeling of clarity in my brain. Still can't remember stuff but the fog is gone & I have more energy than I have had in a long time. I no longer need to take Modafinal and I feel better in general. I am not ready to sit back and let MS take over. I listen to my doctors but I don't always agree with them as they are only human. I listen to my body and try to put both the doctor's and my body's advice together to make my decisions about my health.
Hi Mssailor, I read the same article about DMTs not being needed after 60. I am 67 so I quit my Glatopa that same day. I have never had a relapse. I have had the same symptoms for as long as I can remember. They told me I had MS 10 years ago when I went in for a back problem. I have found very little help from Doctors and since I was told I had MS my symptoms have just increased. Stopping Glatopa has had no effect at all for me except the injection lumps have begun to fade. I wish you luck.
A very warm welcome to you Mssailor, you're now family here & I agree w/ every1 else, just go w/ your gut & whatever neuro. Says, I'm a newbie w/ M.S. just got DX'd in May & I am going the all Natural Route, better diet( No Gluten, dairy ect..) & high doses of Vit. D3, Red Clover Blossom tea, & a leaky gut cleanse, cuz whenever our guts our clogged, the toxins go to the brain & immune system & Auto-Immune results! I'm reading an awesome book called "Healing M.S. by Ann Boroch on Amazon Kindle & it's wrking... Slowly managing it, I'd rather go natural than being a himan pin cushion, & guinea pig of pill popping for the Harm-ucuticals... But wanted to say welcome!💗👍😃--Jazzy🌹💜
Hello, I'm Debra and I have had MS since 1997. I was put on Betaseron and had been taking it until the end of last year. I am 68 now. My neuro. suggested discontinuing my shots. He suggested mega doses of biotin and I also started mega doses of D3. I have an appointment with him first of the year. I am still living by myself and can drive short distances. I can get around with a rollalater and in the house with my cane. I notice some changes but I'm sure old age plays it's part also. I am living alone so I can still function fairly well. Good luck to you. Debra
Welcome. Wonderful question and some great responses. I have personally learned a lot here. For the first time a few months ago I heard a nuerologist in a webinar brought up this option. He advised that more nuerologist were exploring this option for patients over 50. This got my attention because this was news to me especially since I'll turn 50 next year and I've been on Tysabri over 6 years with stable results. So I'm sure all the input offered will be beneficial to you. Peace and blessings ☺️🙏 ☺️
I am going to see my neurologist tomorrow and will ask this question. Currently on Ocrevus and I am not sure of this age to stop treatment discussion. And then there’s this insurance and denying DMTs to patients because of their age?
Hi my name is Mary I am 65.7 yrs it was discussed about going off DMT but not yet it has been 4 yrs. since I had a bad flair with my MS & as it screwed up my whole body & I'm still recovering from it naw I think I've come back as far as I will. I'm still going to wait a while before trying to go with nothing. I am interested in how you do so please keep posting. Mary
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