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198419 tn?1360242356

Tecfidera (BG-12) Users: Past and Present

How exciting is this to add a new med to our DMD user threads!. I always post "past and present' on these  so they stand the test of time when referred to for years to come.

Has anyone started? And, since this is so new..... Anyone waiting on arrival?

Like the Gilenya User thread, you all will have a place to share your beginnings w/this treatment, and also be able to help those who come after you seeking experiences and advice :) You can refer this post to new users so they can add their name and date, etc. like this:

-When dx'd?
-Other treatments prior to Tecfidera (BG-12)?
-How long were you on them?
-How long have you been on Tecfidera?


60 Responses
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Avatar universal
Congrats on getting started! :-) I still occasionally get the rash but it never itches just prickly.

C.
Helpful - 0
12080135 tn?1453627571
First dose of 120mg this morning. Flushed face after 2 hours and arms/legs after 3-4 hrs. Only lasted about an hour after that then all gone.

I did eat some biscuits when the flushing started as I thought have something in my stomach might help - though I'd be rather round if I have to do that every day.

Reading everyone's comments has helped calm my nerves - looked like an allergic reaction on my legs, but gone now.

Nx
Helpful - 0
8398640 tn?1398042546
Hi, I had the same experience and ended up having to stop taking tecfidera for two weeks.  Then I weaned back on slowlyyyyy and was able to avoid all stomach side effects.  I took 120 mg, once a day for two weeks. Then I took 120 mg twice a day for two weeks, then I took 240 mg once a day for two weeks, then I took the full 240mg twice a day.  So it basically took me two months, but it was SO WORTH IT.  Definitely talk to your doctor about gradually working your way up to the full dose.  I really wanted to quit but am glad I stuck it out :) Hang in there
Helpful - 0
Avatar universal
Hmmph. They need an edit feature on here:  I consider...considering?  Upon further *consideration*, I need to proof my stuff better before I post.  Sheesh...
Helpful - 0
Avatar universal
Just an update, for all the kind words of encouragement I've received here: I'm almost afraid to jinx myself, but for the last few days at least, the nausea has not hit. I'm not sure if it is because I'm finally acclimating to the Tec, or because I've decided to try to head any nausea off at the pass, but I'll take it!

Since I noticed that the nausea would hit 2-3 hours post dose, what I've started doing is after eating mymeal/taking med, about 1 hour after, I'm taking a Zofran, the idea being that if any nausea tries to start, I'll already be primed with an anti-nausea drug.  I don't know if that's a good way to view it or not, but for the moment it seems to be working.

So, for my first 3 weeks on Tec, I've only missed 3 times of my evening dose.  I consider that pretty good, considering.

So, just moving forward one day at a time right now.  Oh, and I'm not flushing as much either, although that never bothered me enough to make me ever consider skipping a dose.  The thought of tossing my cookies? Yes, Flushing no.  But anway, that seems to be a bit better too.  I'm hoping I'm on the downhill slide of the worst effects now....

Thanks again for the pep talk guys!
Helpful - 0
Avatar universal
Morning,
I'm new to the community. Was dx with RRMS about 10-15 yrs ago. Began with copaxone daily inj. HATED THAT! Recently (last year) switched to tecfidera. MUCH better! The transition was very smooth. Only one hitch. The "flushing" seemed to cause my normally mild peri-menopausal flashes to become raging back drafts! Otherwise, have experienced few "minor" flares!
Especially in REALLY extreme temperatures.
Still trying to REMEBER to take meds 2x/day when my routine changes but that's life! At least my life!
Helpful - 0
Avatar universal
Hang in there, I was ready to call it quits when the nausea and pain got too bad. I wanted to skip my evening dose and the nurse asked me to take it anyway but just the 120 mg. My cramping didn't subside for almost 24 hours even with the half dose.

I tried taking Gravol and drinking ginger tea but it was unbearable even with that but dialing back the dosage did help after about 24 hours.

Your neuro should be able to give you the OK to go back to the starter dose so just give him/her a call and see what they can do.

Good luck!

Corrie
Helpful - 0
Avatar universal
Thank you both for the tips.  I will likely talk to the doc soon, because yes, this has got to moderate or I'm going to be unable to function properly, in several ways.  For one, I can't be felled by nausea while at work. The other is, by taking the Zofran for the nausea, well, let's just say it's causing a problem that makes me long for the common lower-GI symptom they say is caused by the Tec. I just LOVE having to take a med to counteract the side-effect from the med I'm taking to counteract a side-effect from another med. It's like a one of those tunnel of mirrors that appears to go on forever, but this is lined with meds.

I just broke down and didn't take last evenings dose. I ate a VERY small meal, but I could tell it was NOT digesting properly, and I thought, I just CAN'T take another night of broken sleep. I just CAN'T. So I weenied.  I did get some sleep thank goodness, but I did miss a dose.

I know I have to do this, but it really is a bit more difficult to take correctly, than I assumed it would be.  Sigh...
Helpful - 0
Avatar universal
Hi there! I did good on the full dose until the 3rd week and the nausea and stomach pain were unbelievable.

I would get severe mouth watering that woke me up and I would bolt to the bathroom but nothing would happen.

The stomach pain was pretty rough too and I spoke with the Biogen nurse who put me immediately back on the starter dose (240 mg/day).

I did the starter dose for another month to help my tummy and then I moved up to 360 mg/day for a week and then the full dose again after that.

A couple of days into the full dose, I got a bit of pain and nausea but then everything was OK. I will periodically get some pain/nausea now (5 months later) but it is primarily when I don't eat enough before I take the pills.

I did injectables for a year and I was determined the Tecfidera was going to work so that I didn't have to go back to jabbing myself.

I hope things go well and that the nurse or neuro that you deal with can help you out.

Corrie
Helpful - 0
Avatar universal
Hi, Artanis. I can relate to this one. My first week on Tec 120mg twice a day was totally fine. Second week, at the regular dose of 240, not fine at all!

No flushing, no nausea, but chained to the bathroom with intestinal 'distress.' After a few days of this I contacted my neuro, and we agreed I'd stop the Tec for a few weeks, as I'd be out of town much of that time. When I came home, he started me back, but on 4 weeks at 120, not 1. That worked like a charm! When I then went up to 240 I had no problems at all. My white blood count has stayed good thus far, so all systems are go.

You really need to talk to your neuro about this right away. There are quite a few here who needed a different break-in period, but then did well in terms of side effects. If experimentation still doesn't work for you, try a different med. Your quality of life is important.

Good luck.

ess

PS  I see I've described my experience in a post a few months back, so this is a positive update.
Helpful - 0
Avatar universal
I was recently diagnosed (Nov 20th) and started Tec on Dec 20th, so I'm in the middle of week 3.  I've been scrupulous about taking it 12 hours apart in all cases. The first week of 1/2 doses, was easy peasy, with no flushing and no stomach symptoms. The first week of full dose was good with a only a bit of flushing that was not terribly bad, and except for one night when my stomach was so acidic (I already have reflux) and nauseated, that I could not bear the idea of taking the pill and barfing it back up forthwith.  So that night I missed one, but started again on time the next morning.

Since then I've had one other day of pure misery on the full dose and again was so bilious that I deliberately avoided an evening dose.  I had one day where I was forced to run home due to nausea at work. That's SO fun. And right now of course, when I came pretty much bolt upright at 12:05 am with severe cramping and nausea.  I LOATHE nausea, but I truly resent the hell out of losing the little decent sleep I get.  Grrrrr.

So, so far, no diarrhea or genuine tossing of cookies, thank goodness, but stomach cramping and general nausea has been fairly bad, I'd have to say. I'm grateful for Zofran. It does not make it perfect, but takes the edge off at least.

Here's to hoping it improves. Since this is my first med, I've never had to do one of the injectables, but I've read enough to know that most people are willing to gnaw off a limb to get OUT of those and onto an oral, so I realize I'm quite lucky really, and should probably sit down and shut up. But I'm just SO bloody tired right now.  Need sleep.  Too many of my posts these days have wee-hour timestamps.
Helpful - 0
11076597 tn?1415102426
I was diagnosed a month ago after having issues with my vision, and started tec then. So far, the only side effects I can see is the itching. I started having crazy itching on my head and last night noticed it on my back. I really haven't had any issues with upset stomach yet... knock on wood. I have a meal with my pill so that might help. I was also told by the advise nurse to try and maintain taking the doses between 10 - 12 hours apart. I'm not sure if that makes any difference but I try to keep to a constant regiment.
Helpful - 0
1896537 tn?1381900009
I'm planning to start this as soon as it's licenced for use here in the UK! It should be available from the end of November according to ms nurse. Tgis is dependant on my last mri and what the neuro says when I see him next month as there was talk of starting me on Tysabri
Helpful - 0
8398640 tn?1398042546
Anyone else experiencing severe hair loss? I've been on it for about three months
Helpful - 0
Avatar universal
Hey friends!

Three full days at the 240 mg and I still have not experienced any adverse effects. I continue to take the aspirin with it to ward off the flushing.

Hope this continues.
Helpful - 0
Avatar universal
Hi!  Like ess, I had some fairly nasty gastro issues at about week 3 of the full dose.  I went back to the starter dose for another month (240 mg), then did 360 mg for another 2 weeks before trying the full dose again.

About 3 days into the second time at the full dose, the GI issues started again but went away quickly.  I am glad that I stuck with it and other than occasional issues with flushing, I have been on the full dose this time for almost 2 months.

Some folks do not have an issue at all.  The aspirin definitely helps if there is flushing and I tried my best to keep my pills 12 hours apart.  

I also made sure to try to eat about 3 hours after the morning dose.  That was when my nausea would seem to start and the nurse at the drug company here told me that 3-4 hours after you take it, it is fully effective and having an empty stomach at that time is not the best plan.

Good luck!

Corrie
Helpful - 0
Avatar universal
Ess,
Wow.  That does not sound like fun. I am nervous about going up to the full dose for these exact reasons.

Usually I am sensitive (head wise) to meds. For example, narcotics and cold medicine make me loopy and I cannot function.

On the other hand I have a stomach of steel and do not usually get stomach upset from any  medication. I hope it stands up to the Tecfidera!

I wish you the best of luck with this new taper. Keeping my fingers, toes and hairs crossed for you!

I agree about the Gilenya (there are cardiac concerns). I have a strong family history of bad hearts (none of my own) so I would never take that one either.

Hang in there!
Helpful - 0
Avatar universal
I started Tec in early August. Did great on the 120mg dose, no side effects at all. But when I went on 240, look out. After a few days I got what I'll call extreme intestinal upset, and it kept getting worse. Really affected my life.

So I talked with my neuro and told him I'd be out of town a lot for the following few weeks. I wanted to stop the med and try again when I'd be home for a long stretch, at which point I'd like to try Tec at the slowest possible rate. That way I'd know for sure whether or not I could tolerate it. My neuro agreed :-)

The long stretch is now, and tomorrow I will start at 120 for 21 days instead of 7. Have all my fingers and toes crossed. My neuro isn't wild over the other oral meds, especially Gilenya, for someone my age. He has mentioned why, some study, but I don't remember. Meanwhile my MS has  been reasonably quiet for the past couple of months, but I still have all my basic stuff going on, what is euphemistically called the 'new normal.'

ess
Helpful - 0
Avatar universal
Thought I would add my experience.

I started Tecfidera this week. So far I am doing well.

I had read repeatedly in the reviews for this med that taking a Tylenol or aspirin before helps with the flushing.

I had the flushing only one time and it was when I decided to NOT take the Tylenol before hand.

I have tried both Tylenol and aspirin 30 minutes before and both work equally as well.

I will update again after I get on the full dose. Crossing my fingers it still goes well.
Helpful - 0
Avatar universal
I was diagnosed with MS in June 2014! I just started Tecfidera on Friday August 8. Four hours after 1st dose I started flushing. Started on the face, ears, then down neck to arms, knees and feet. I was itching and felt like I was on fire. After about 30 minutes it went away. Been on the meds 3 days and have had my second flush, but not as bad. Just left me with slight headache. As for stomach issue, feeling bloated constantly. Other than that during great. Hoping it does not get worse especially with gastro. Good luck to everyone who is taking the med!
Helpful - 0
6034128 tn?1381871014
I was dx Jan. 2013 with RRMS. Had symptoms appx. 8 years. Lesions are large and numerous and  'high moderate' level. Started Tecfidera end of Oct. 2013.

I feel very blessed that my side effects are manageable:
1. flushing that is gone by hour 2 (and gets milder each day)
2. some nausea but not incapacitating
3. headache but manageable

My last MRI showed stable with no progression. That was great news!

The not-so-great news is that the MS hugs are happening more frequently and they are leading to a complete shut-down - no bowel movement for 3 days! I went to ER the first time as I was in so much pain and didn't feel the tingling until morphine took the edge of the pain. CT scan showed compaction and bowels not moving. Now I have mir-a-lax so I won't be constipated that many days again.

Also, I've been diagnosed with disinhibition (financially)  and impulsivity due to where lesions are. $22,000 in credit card charges! Yikes. Mostly on 'game' site buying no value chips to spin slots. Thankfully, it's only the one website (which looks the least like a real casino than any of the others). There were some toilet paper purchases from Walmart online as well but mostly the debt is due to this 'gambling.'

Tried Abilify in conjunction with celexa to try and curb the impulsivity but even half a tab of Abilify gives me insomnia. Anyone else have any luck with treating disinhibition and impulsivity?

God bless all my fellow MSers and their own loved ones!
Karen
Helpful - 0
1637739 tn?1371688706
It's been over a year now that I've been on tec.  I have had the occasional flushing and diarhea but nothing major.  About at the 6 month mark I think I had some nausea and more intestinal issues and was worried but only lasted a couple months.  I feel great now....best I've felt on it!!  There are pros and cons to all the meds.  We just have to decide what we can tolerate the best unfortunately.  Luckily for me I don't have any side effects anymore.  I wish the best of luck to the rest of you and hope you can find a great med that works for you!!

Hugs,  
Jeny
Helpful - 0
Avatar universal
Eeek, I am halfway through Week 6 but have to say that the nausea and stomach pain have gotten a lot worse in the last week.  Last night was the worst and I still have cramping despite not taking my dose this morning.  That is a whopping 17 hours of cramping.  

Glad to hear titrating the starter dose is helping folks.  I have minimal flushing issues, although I do have it daily at some point, it is not as bad as the first day (Day 5 of Week 1).

I will only take one pill this evening and one each morning and evening for a bit, then up to one in the morning and two in the evening.  I will eventually get back up to the full dose. Fingers are crossed.


DX was April 2013, Rebif June 2013-May 2014 then Tec

Corrie
Helpful - 0
8398640 tn?1398042546
I started on Tecfidera this month, got through the starter week with just some flushing on day 1.  Then started the full dose and again, flushing on day one but nothing too bad :)  Then on day 6 I started having horrible severe stomach pain- like the kind where you have to just curl up and not move.  That would last about 4 hours each time I took a dose.  By day 8 I couldn't take it anymore, called my neurologist office and they told me to stop taking it.  I am expecting a call Monday from my dr with a plan to possibly wean me onto the full dose again, but at a much slower rate.  I am hopeful that this will be successful after reading Mikeysmom1995 experience :)
Helpful - 0
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