My doctor wants to discontinue my MS medications

Hi, !

The discussion as to whether to stop medications should definitely be a conversation between you and your doctor and not one sided. If you have concerns, I hope you feel comfortable addressing them with him.

Stopping meds does seem to come up around the age of 60 for people dealing with MS, so you might be a little on the young side, especially since the meds are working for you. But, I do understand your doctor's concerns about infection, especially as we start heading into Fall/Winter and the inevitable cold and flu season. If your disease course seems to be stable (no new lesions and/or a decrease of symptoms) as you turn 60 or older, doctors do seem to open up the topic of stopping medications, so you are not the only one dealing with this decision.

I wanted to share some links to discussions and articles about stopping treatment, as you are not alone in facing this decision. Here's once discussion -- https://multiplesclerosis.net/forums/eligible-age-to-consider-stopping-ms-treatment. And one of our patient leaders discusses her transition off treatment here -- https://multiplesclerosis.net/living-with-ms/stopping-treatment-due-to-age.

still checks in here and if she sees your post, she might share her insights.

Ultimately, it is YOUR decision to start, stop, or change your treatments. Your doctor can weigh in, but you have the final say as to what is done to your body. So, again, I hope you can have the discussion and hopefully, he can fully explain his reasoning and alleviate your concerns.

Best, Erin, Team Member.

I am currently 68 years old and when I was 60, my neurologist said the research is showing that after 60, I didn't need to take my injections of Avonex, as long as they did an MRI each year, and I had NO more lesions on my brain. I've had yearly MRIs with no further lesions, so I've not taken any more medications for my MS.I have relapsing- remitting MS so I don't know if that is the reason for this or not. I do not have balance issues, I have optic neuropathy in my left eye, heat and humidity are my cryptonite so I stay in air conditioning in the summer, alot. I don't know if this is helpful to anyone else but this has been my experience. I'm doing well and Iove not having to take the injections once a week.

Hi ! I'm on site today and happy to share my adventures with stopping COPAXONE when I was, I think, 68? Im typing on my phone and know I would lose my train of thought and this conversation if I checked the date of the article Erin suggested.
Here's the thing: I started shooting up in the year 2000, and i stopped before the pandemic. Of course, Copaxone works by offering MS a more attractive target than the patient's own myelin, in which it is unique among disease modifying therapies for any autoimmune disease. So my immune system was unaffected by the drug.

Once I stopped using Copaxone, I didn't feel much different except that my subcutaneous fat stopped hurting. from the injections. Admittedly, it had only hurt at a level of about 2.5, but going from 2.5 to 0 is noticeable!

It had been some time since MS had been actively causing new symptoms but the existing old symptoms stuck around. Difficulties voiding, some gait troubles, hyperacusis continue to bother me to this day. If you choose to stop your medication, you may notice some of your old symptoms may stick around. Or they may not! If there's one universal truth about MS, it is that your mileage may vary! (My phone just typed those words, which gives you an idea how often I use the phrase!)

One interesting thing happened to me after I went off my DMT. It turns out that there was no discernable disease activity after 2008, even though I stopped using Copaxone some years later. It's funny-- I like to say I'm healed of MS but I don't use the word cured. Cured me wouldn't still have symptoms. Healed me has symptoms but they don't carry the psychic weight they did.

I'm happy to see friend Potter offered her insights as well! She's been a rock in this community for as long as I've been here.

@FinlandAdventures, I hope we've been able to offer some additional information and experience to aid as you decide whether or not to continue using medication for your unique case of our disease. Thanks for stopping by to get more information, and feel free to ask more questions! We're here for the community. You're not alone and your involvement with this site helps people you and I may never know. Keep in touch and if you're comfortable telling us, please let us know what you decide.

I was diagnosed in early 2021 at the age of 55 after having my one and only experience with Vertigo. At the time my neurologist stated I had probably had it for years and didn't know. He immediately started me on Rituximab infusions, every 6 months for 3 years. I have not had any infusions or any other medications for 2-1/2 years and luckily have had nothing more than minor, occasional MS issues. Nothing that has completely put me down. I manage my stress better than I ever did as well as making sure I stay well hydrated which my doctor and I agree has been a major assist with my MS. The main take away for me has been to listen to my body and not try to push myself which should be something everyone should do as our bodies are getting older no matter what we are battling.