Tecfidera (BG-12) Users: Past and Present

[sllowe]

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?

[Corriel]

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

[Artanis12]

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...

[Corriel]

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

[essdipity]

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.

[Artanis12]

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.

[Grant1270]

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.