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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

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

posted June 18, 2016
A MyMSTeam Member

When hurricane Sandy hit long island .. where I was living at the time, I was in Canada at my daughter's. I was told to stay put and not come home..no gas, no electricity. So I was giving myself my meds every other day and I started to have to hold onto walls again. I would never chance doing that ever again.

posted June 20, 2016
A MyMSTeam Member

I agree with not taking chances and don't encourage or endorse anyone going off their meds, just to be clear!
For me, it got to where it appeared that I was having more trouble on meds than off. I don't believe it was because of the meds themselves but because of the rapid change from one to the next to the next. Along with that, I had prescriptions for other issues (spasticity, insomnia, etc) and I felt like they weren't playing nice together. After having a fever for over 3 weeks that I couldn't kick and some other problems kicking up again, my neuro took me off Aubagio temporarily. I decided to also wean myself off the others to give my system a chance to reboot. I think I really needed it, honestly. I'm going to start up again on MS meds again at the beginning of August, but I'm not sure which one my neuro will decide to try out this time. What I do know is that for the last couple of months I have felt great. The only prescription med I'm taking is Nuvigil and I love feeling like myself again.... I know it won't last forever and I am going back on meds, but right now this is the right thing for ME.

posted July 14, 2016 (edited)
A MyMSTeam Member

Yes, after a year and a half on Copaxone, and about the same on Tecfidera. My white cell count plummeted, and i tested positive for the JC Virus, so my neuro took me off the Tec. and agreed that going DMD free was an ok alternative, even though he tried to convince me to go back go Copaxone...

posted July 1, 2016
A MyMSTeam Member

I'm off meds right now on my neuro's orders....

posted June 22, 2016 (edited)
A MyMSTeam Member

Me. Betaseron. I trying to get better on my own.

posted June 19, 2016

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