I am sorry I thought I had made this clear. I am on Disease-Modifying Therapy)DMT). I have been on it as soon as I could get it twenty years ago and have never stopped and will never stop. I have a phobia, an irrational fear of needles but I stood up straight and did my needle every other day for years. Never missing a dose. Actually I may have missed a dose flying back and forth across the pacific ocean. Time zones and stuff. Rebif hurt and hated me so back to beta. The logic was less injections and that is all.
Tecfidera came on the market and of course no injections so I was on it. It is a DMT, NOT a Disease Stopping therapy or Disease Curing Therapy. Those do not exist, so of course there is disease progression, but it is slow. This is what I want and what "YOU" should want as well. Little or no change in Magnetic Resonance Image (MRI) over time is a very good thing. Tecfidera is around 35% effective. not 100%. I expect change but am aware that I am slowing disease progression and no more than that.
Exercise and diet with a strong attitude also help. Any diet that does not cost me a fortune is a good idea. Go look at Dr Aaron Boster on YouTube and listen to him. I never get his spelling correct it may be Booster but search and "YOU" will find him.
Start on DMT immediately and NEVER stop, "YOU" like me are sick, suck it up and take your medicine, regardless of side effects. Except for the Tablet that has PML, that risk is not worth it in my OPINION.
Royce (the ms writer)
Make a choice and stick to it and stay strong, this is not an easy disease
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RoyceNewton
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Boy can I relate: as I was dx in 1994 (when I was just 25 and Beta was on a lottery). I didn't start a DMT until 1997 (Avonex) which I continue today (22 years and counting). I too am a huge needle weenie (and IM injections are the worst) but fear is a great motivator!
In 1997, my first neuro appt after my dx (in 1994 I was told I had a few white spots and that young women typically do very well with MS, etc., despite it all my MS progressed), my new MRI (1994-1997) showed substantial SILENT progression! The neuro said I was "lucky" three times as all the new lesions were on parts of the brain that "I didn't use." Huh?
Twenty five years later, today, so much has been learned about multiple sclerosis. We now have many treatment options. Heed Royce's words of wisdom newbies!
No, sir! Your posts are what finally "brought me out of my shell" when I first joined up here. Your posts are always inspirational and help me to press on; so I can only imagine what impact it has on those "newbies."
I had to stop rebif Only because It was making my white blood cells low. And they said it can cause me to not be able to fight off infections. Other than that after getting past the 1st week of being sick i was ok. Its going to hurt but i had the auto injector which made everything easier.i switched to ocrevus which has been going good i dont really know if its helping yet have not had my mris yet.
I never liked needles either. So when I got my monthly infusion of Tysabri, I would shut my eyes and hold on to the chair arm-rest (with my non-injecton-arm hand) using the Vulcan Death Grip while the needle was inserted. And, always ask the nurse if she was "Warmed up yet." It never hurt, but it was the idea of the whole thing. Having to inject myself, beyond Copaxone, which was a subcutaneous only injection, would have been a challenge for me. My last injections were forTysabri infusions.
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