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?

[zoefromsussex]

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

[Lor301]

Anyone else experiencing severe hair loss? I've been on it for about three months

[zerodegrees]

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.

[Corriel]

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

[zerodegrees]

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!

[essdipity]

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