I've been on Tecfidera for 4 months now. Each day my walking has deteriorated to the point where I can't even make it through the house. I still get extreme flushing, even though studies show the side effects should start to diminish after a month. I'm talking my whole face looks like I've been out in the sun all day. I also have severe spasticity, which I'm on Baclofen for. But, more than anything, I'm just so weak it's hard to get around.
Soooo, today I did not take my Tecfidera as a test. Believe it or not, I felt so much stronger tonight that I was actually walking somewhat normal and am able to type this with speed, as my hand was also really affecting me. I took the pill tonight, as I'm nervous to just not take treatment, but as soon as I took it, I began flushing and feel horrible again.
I have an appointment with my neurologist next Tuesday and I plan to discuss this with her. I know I can't continue to just take one pill a day, and I'm sure she won't agree to it, and I'm also debating if I want to continue treatment. I know it puts me at risk for not being protected, but my quality of life is really being affected and if it's the treatment that's causing it, then I'm really debating whether I should stay on.
I've done Tysabri, but being JC+, I knew I didn't want to stay on that and I had no luck with Copaxone. None of the other DMDs appeal to me. I was super excited about Tecfidera coming out, but I don't know how much more I can handle not walking. I really believe the pill is causing my MS symptoms to flare up, as I wasn't this bad before.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Soooo, today I did not take my Tecfidera as a test. Believe it or not, I felt so much stronger tonight that I was actually walking somewhat normal and am able to type this with speed, as my hand was also really affecting me. I took the pill tonight, as I'm nervous to just not take treatment, but as soon as I took it, I began flushing and feel horrible again.
I have an appointment with my neurologist next Tuesday and I plan to discuss this with her. I know I can't continue to just take one pill a day, and I'm sure she won't agree to it, and I'm also debating if I want to continue treatment. I know it puts me at risk for not being protected, but my quality of life is really being affected and if it's the treatment that's causing it, then I'm really debating whether I should stay on.
I've done Tysabri, but being JC+, I knew I didn't want to stay on that and I had no luck with Copaxone. None of the other DMDs appeal to me. I was super excited about Tecfidera coming out, but I don't know how much more I can handle not walking. I really believe the pill is causing my MS symptoms to flare up, as I wasn't this bad before.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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