Fatigue?

[A2KB]

Hi folks,

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

[Ash3]

I have been on it since May15 and it is hotter than you know what in the deep South. I have been extremely busy more than usual and I feel the extreme fatigue as well. Has anyone else experienced this? Or is this a new side effect????? Ash3

[prauly]

I have only been taking Tecfidera for a week, and I noticed increased fatigue on day 3. I would categorize it as significant as I fell asleep drinking my morning green drink. That was a first! Can anyone who has been taking this for a while also experienced increased fatigue, and did it get better over time?

[A2KB]

Yes- I am very interested to find out when it gets better

[Jspinnerlamar]

Yes please tell me it gets better!! Fatigue is definitely a symptom I've had w MS but this feels different. And I've had a few nights when I don't go to sleep until 4am!! Just not tired after taking evening dose at about 8!! So there's clearly some relationship between sleep patterns and Tec... Just can't figure it out yet!

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?

[prauly]

Hi everyone. So, I finally called the Tecfidera and called the 'Useless Nurses' line. Oh, sorry, I got that wrong -- 'Active Nurses' Line. I explained to the nurse that I have had very minimal side effects, overall, but have EXTREME fatigue as I can barely make it through the day without laying down. She told me that 1/3 of the patients taking Tecfidera have complained about extreme fatigue and that it seems to dissipate along with the other side effects after about two months. She also apologized for the information not being included in any of the materials.

[catranchergal]

I've been on the full Tecfidera dosage for about 75 days, and my fatigue has gotten worse and worse over about the past month. Stomach issues have generally calmed down, and the advice about eating something close to time for meds has been very helpful. I've also posted on a different discussion thread about mouth/gum sores/abrasions - still have those. Occasional flushing but not frequent and usually passes within about 30 minutes or so.

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...

[xpsychiatricmd]

I too have the fatigue, which I consider more as sleepiness after I take the Tecfidera. I usually take it at 6PM and by 9PM I am ready to retire for the night. This means that I would wake up by 5 or 6AM, too early at my household. I will begin taking it later to see what is the outcome. It doesn't happen as much with the morning dose, but that is when I take my stimulants. Taking the stimulant late (4 or 5PM ), doesn't change my evening response.

[Ash3]

Just a thought tomorrow I will be on it for 90 days. Just went to neuro,bloodwork good,and mri stable. I have noticed with my lifestyle raising 2 teenagers and getting ready for school,etc. that if I pace myself I still get the major sinking spells but if I drink fluids and wait it out it does go away. However, the fatigue I believe is just part of it. I will go to bed early tonight due to I could not pace myself today. So I basically just make adjustments. My family knows after dinner it is upstairs for me. Hope this helps. Ash3

[xpsychiatricmd]

Still dealing with the sleepiness after Tecfidera. Going to sleep earlier, sometimes even at 8PM! Also getting warm skin and some itching. I also take methylphenidate as a stimulant during the day. There are times that I would wake up at 2,3 AM. Maybe I need to lower the methylphenidate dose. Starting today, I will no longer take aspirin before Tecfidera. I will monitor the outcome.

[xpsychiatricmd]

Doing OK without the aspirin but I still get sleepy after taking the Tecfidera!!!

[Ash3]

Is anyone getting better with the fatigue? Mine has seemed to have gotten worse and I have been on it since May 15. The ms doctor recommended ritulin but I am very sensitive to meds so I do not think so. I have as well noticed sleeping patterns have changed:getting up too early waking up a lot at night and dragging by 10 in the morning. I as well cannot quite figure it out. Ash3

[xpsychiatricmd]

I take Ritalin which I found helpful, 10-20 mg 3x a day. Switched the Tecfidera to lunch and dinner. On this protocol, I can go to sleep latter, less awakening in the early morning hours.

[Ash3]

xpsychiatricmd, I think I am going to try it. Thanks. Ash3

[xpsychiatricmd]

I still get sleepy on the Tecfidera. The Ritalin helps but not how I would want it to be. My ambulation is not to par with the sleepiness. This is important because my last flare-up push me from using a cane to a wheelchair. I am trying to transition to a walker. But this sleepiness, makes it difficult ambulating with the walker and building strengh. I now have lesions on my cervical spine so my days off a wheelchair may be numbered. I will discuss this with my neurologist next time. I am also looking at Lemtrada whenever is available.