I'm on my 2nd go-round with Tecfidera (took it for 6 weeks, then meds ran out, then insurance was dickering around...long story short, I'm back on 120mgs 2'ce a day for a month, then I'll increase up to 240/xdaily after 6 weeks).
The last time I was on Tec I noticed an increase in fatigue - but I wasn't sure if it was the brutally hot weather or the new med. However, this time around (with nice, cool weather outside) it is definitely the Tec that is causing the fatigue. I do not have MS fatigue as a usual symptom, only when I "overdo it", so to be completely wiped out mentally and physically every day around 1 p.m. is difficult to deal with. I am hoping that this, like the nausea, diarrhea (which I also have - yummy!) etc. goes away after a few months.
The fatigue is such that my eyes feel like lead-weights are attached to them...all I want to do is crawl into a corner and sleep (but I work full-time), I find myself willing my eyes to remain open and my mind feels fuzzy and stupid. Ugh! I can deal with mild-to-moderate flushing, runs, itching, farts, etc. but the sapping of energy is SUPER distressing
FYI I've been on for about 30 days now ... Doing the eating regimen described here has helped. But intense but short lived hives has returned last couple days almost exactly two hours after dosing for about thirty minutes.
There's so much consistency in our reported reactions I wish some MS doctor could explain to us what's going on and how likely it is to improve with time. Where's the clinical researchers?
Fatigue does not seem like occasional, "normal," MS fatigue -- seems like all I want to do is go to bed -- EVERY DAY.
One other thing I've noticed is that I seem to be more sensitive to getting dehydrated, and if I don't get enough fluid, I wake up with really bad leg and foot cramps. (Yes - take calcium, D3, magnesium, the usual stuff). Have had leg cramps before (seems to be an aging "thang"), but I seem to be more susceptible than I've been in the past.
I've been diagnosed for 17 years and started on Betaseron within three months of diagnosis. After about 10 years, relapses started happening more often, and I had developed antibodies. Neurologist swapped me to Copaxone which I took with no noticeable side effects for about seven years - except for injection site "divots" which had gotten very large in circumference and were getting deeper. After 17 years of injections, I was thrilled to read about Tecfidera, an apparently safe, effective oral drug. I asked my neurologist to prescribe --I was his first Tecfidera patient so he didn't have any personal experience with his own patient base when I started in lat May 2013.
I've been extremely, extremely fortunate with few serious or lasting MS relapses over the years and minimal side effects from meds, but I'm definitely having second thoughts about taking this medication. I'm trying to give it a full 90 days before I call the neurologist to talk about whether I should stay on Tecfidera or not.
Thanks to everyone who's posting their experiences - helps keeps things in perspective and provides some confidence that other MS folks are having some of the same reactions that I am. I.e. I'm not crazy...