This Is MS Multiple Sclerosis Community: Knowledge & Support

Just returned from my 6 month visit to my neurologist. Really like him, I have been a patient of his for over 8 years, since I was dx. He is really excited about Tecfidera, he wants to get me on it as soon as I feel comfortable about switching from Copaxone. Says it is better than Copaxone with little or no side effects. Only thing I guess it has only been available for several weeks. He believes if things go the way he expects them to it is going to be the big oral drug for MS. I have been doing very well on Copaxone, but I could do without having to give myself the injections. Wanted to hear what other people are starting to hear.

I have a follow up with my neurologist in July. I think he may suggest Tecfidera also. I, too, am currently on Copaxone. I also have been doing the antibiotic protocol for 4-5 years. I am doing very well. At this point I have decided to wait on Tecfidera if in fact he suggests it. I don't want to "rock the boat" and I want to wait until more data has come out after Tecfidera has been in use in the US for MS. I am seeing people on this site complain of pretty uncomfortable to painful stomach pains as well as flushing. I want to wait to see how that all shakes out. Of course, if I were not doing well currently my decision most likely would be very different. I am lucky to have the luxury of waiting and I appreciate those who share their experiences with Tecfidera on TIMS.

Hi Dave--
I'm sure you know this, but the MOA for copaxone is very, very different than Tecfidera, which uses the NRF2 pathway. Tecfidera depletes your liver of glutathione (an important antioxidant) and uses a pro-oxidant pathway to encourage your body to respond by cranking out more antioxidants. It also has been known to severly deplete lymphocytes, causing lymphopenia in some, and that is a concern...you'd need to be monitored for this. The flushing and all of those nasty gastrointestinal side effects (which affect 60% of people who take it) might be a drag, too. And yes, PML can be a cause for concern with long term use.
Marc (wheelchair Kamikazee) wrote up a good review:
http://www.wheelchairkamikaze.com/2013/ ... d-pml.html
my review is probably a bit more damning, but I'm not a fan. I have links to research and commentary.
https://www.facebook.com/notes/ccsvi-in ... 4812867211

Good luck to both of you, whatever you decide...believe me, Jeff would love to ditch the needles...but he's not wanting to rock the boat just yet, either.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheerleader, thank you for your informative response. I do not intend to make any quick changes, but I have a feeling this drug is going to take off. Time will tell for me. Dave

Tecfidera will likely "take off" because nobody markets MS drugs better than Biogen. They will have their claws into the neuros and promote this new drug to the hilt. Positives will be stressed and negatives swept under the proverbial carpet. I really hope this drug helps MS patients but remember it is an immune system altering medication and long term safety info for its dosage is not known.

Harry

Dave from Reston: my advice to you is stick with Avonex if it is working for you. I was doing great on Rebif but tried Tecfidera since it was an oral med. after 6 weeks on it, I had a bad flareup, first one in 8 years! Different drugs work differently for folks, and if you find one that is working, stick with it! With all due respect to your neuro, there ARE side effects. Most of us have either bad flushing or gastro issues or both. Mine did not lessen even after 6 weeks, but the worst was the flareup. I am now going through 5 days of IV solumedrol to treat it, and am feeling much better, and I am back on Rebif! Good luck to you!