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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How Many Here Have Had Their Neurologist Totally Remove Them From MS Meds? (Tecfiderfa

A MyMSTeam Member asked a question 💭
Los Angeles, CA
June 18, 2016
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A MyMSTeam Member

All I know is that I'm sick of taking so much medication for all the creepy things MS does to my body.

November 20, 2022
A MyMSTeam Member

What I meant was that I take medication for the MS symptoms and problems. Example: I take bathanocol so I can empty my bladder, and I see a UROLOGIST for bladder problems that MS causes. I take 40 mg Prevacid for stomach inflammation and ulcers. I see an internal medicine Dr for that. I take baclofen for wide spread muscle spasity, and copaxone, for MS. I take PROZAC for depression . I take pain meds including gabapentin for chronic pain, which MS is partially responsible for. 🤔

November 21, 2022
A MyMSTeam Member

I have, but I think it's best to find something to get on and stay on but I've always had bad side effects to ms meds so I've been on and off them for years. I'm currently on Tysabri and it's going well. The down side is that you can only take Tysabri for a couple of years because of the risk of JC virus. Anyway, i was off meds for a while but don't recommend it I do wish you luck.

June 20, 2016
A MyMSTeam Member

My MS soecialist took me off treatment 4 yrs ago as said 80% of MS people stay stable once they reach late 60's & other 20% progress. He did this as I was not showing new lesions on my brain or new symptoms. But I am 74 now & am having more numbness and pain in legs & feet. I was diagnosed with polyneurapathy. But I have a herniated disc L4L5 that could be causing this problem. I avoided surgery as too many whom have back surgeries are no better off or are back in for more revision surgeries. I do PT at times I keep moving as much as my body can handle with daily excercises I go to pool at YMCA 2 days a week I eat and drink what is good for inflammation and stay away from junk food period. Eat lots of vegetables fruit nuts oatmeal chicken shrimp and salmon & also tuna at times. It all has helped me a great deal. I take care of myself. Walk my dog 🐕 just keep moving much as I can. I think this all has helped. My RX is only baclofen & then traxadone to help sleep. Some progression going on but tolerating well without the MS therapies that do have their own side effects. Hope this was helpful to you all. Take care.

February 28, 2023
A MyMSTeam Member

My answer is MS is different for all of us…. So how we react to meds is also different.Until they know exactly what causes it, how to stop it, and how to reverse it they’re just guessing!
If the meds are not causing a problem, you’re not getting any worse, or the worsening is only gradual …why go off of them? Why risk some thing happening?

February 25, 2023

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