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?

[zerodegrees]

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.

[Deansie]

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!

[Milliepede]

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

[jen673]

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

[Corriel]

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

[Lor301]

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 :)