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Tecfidera For discussions regarding Tecfidera (also known as BG-12)

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  #1  
Old 03-29-2013, 11:36 AM
msesq msesq is offline
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Who is switching to BG-12 (Tecfidera) and why or why not?

I am. I'm on Tysabri now, I was on Rebif for 7 years then switched. I love Tysabri, but I recently found out that I'm JCV+. My doc wants me to switch. At first I was reluctant but now I'm on the bandwagon. I initiated the insurance review stuff with Biogen today.

Alternatively I have a friend who has been on Avonex for years and she has no plans to change (even with the idea of going from injectable to oral).

Thoughts?
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  #2  
Old 03-29-2013, 02:15 PM
shalimar shalimar is offline
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My doc wants me to swich from Gilenya (which could cause heart problemns) to bg12. I have low white cells from Gilenya, but not sure if bg 12 doesn't cause low white cells too.
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  #3  
Old 03-29-2013, 03:45 PM
Marco Marco is offline
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I've been waiting for years for BG-12 (Tecfidera) and my wait is almost over. Drug sample, compounding pharmacy, insurance approval, insurance denial ... whatever, I will be going on BG-12 (Tecfidera) from the first moment possible.

When I look at all the approved drugs, and I study how they work, their efficacy and their side effect profiles BG-12 (Tecfidera) is the clear winner for where I am in my MS journey.

The trial evidence is there that BG-12 (Tecfidera) can be a much greater game changer than Gilenya, Aubagio or anything recently introduced to market.

I don't know a single person that would prefer shots over pills.
I don't know a single person that would not prefer a greater chance to fight off flares or disabilities.
In my opinion, BG-12 (Tecfidera) gives me the greatest opportunity to have a high quality of life without taking unwarranted risks.


To me, there are just a few groups of MS people when it comes to meds:
1. some will never go on a disease modifying therapy (DMT)
2. some would like one, but for whatever reason currently isn't taking anything
3. some that are taking a DMT and unhappy with it
4. some that are taking a DMT and happy with it


Group 1: I get the whole big pharma conspiracy people, the diet only people, the religious people, etc. There are even people that have gone 20+ years between flares and simply see no point.

For me, I want the best life possible and the opportunity to enjoy my life and wife for as long as possible.

Group 2: I am currently in this group and have had a rough time with several DMTs. I want to be on a treatment, but the side effects have been much harder than any possible benefit. There are a number of people are MSWorld that have struggled day and night with therapies and yet to find one acceptable.

There are also people that simply cannot afford treatments.
There are people that are between treatments for a variety of reasons from shot fatigue, unacceptable mri changes, a recent JCV+ test or a change in insurance.

A perfect drug would cure this beast and reverse all the damage and that simply doesn't exist. Reviewing the available information BG-12 (Tecfidera) is much more effective than the injectibles and aubagio. Safer than Gilenya and Tysabri and has a side effect profile that I can actually live with.

Group 3: It sucks, you inject yourself week after week to feel lethargic, flu like and the reality is you feel better when not on inteferon therapy. Or you take copaxone and the daily injections have just become to much. Or you're on gilenya and the monitoring and side effects weigh on your mind. You are on aubagio and the numbers make you question why the risk of a new drug for the benefit of drugs that have been on the market for years. Or you've been on tysabri and as much as you love the drug you want to stop rolling the pml dice.

In this boat I would talk to my neuro, discuss the pros & cons of changing. Talk to your insurance company and see what financial difference this would make. Look at the BG12 (Tecfidera) numbers compared to whatever therapy you are on. Ask your neuro every question ... ask about washout periods, ask about best guesses. Ask them what would they suggest to their spouse or best friend.

Group 4: I am so happy that you are on a therapy that is working for you. I personally wouldn't change anything at this point. See if BG12 (Tecfidera) lives up to it's trial data, ignore the hype, forget the bandwagon ... at this point, Biogen really needs to put up or shut up.

Over the next 6-12 months, we will no far more about BG-12 (Tecfidera) than we know now. If the drug performs you'll have more information to do a fair comparison between your current medication and BG12 (Tecfidera) . Since your medication is WORKING please don't rock the boat ... just appreciate the blessing of a medication helping you fight what is a monster to many.


There are almost a dozen approved therapies and they all have their place in the market. Each of us must make the best choice for our own life and for me that happens to be BG-12 (Tecfidera) .

Sorry, if I offended anyone, that certainly wasn't my intent. I am not the smartest guy in the room, but I am glad to be here at MSWorld with some of the smartest people. I'll be happy to answer any questions that I can about any MS topic that exists.

In the end, do whatever you can to help keep this disease from progressing. Reduce your stress level, improve your diet, exercise within your limits, quit smoking, avoid oppressive heat and always try to count what blessings you do have.

Last edited by Marco; 03-29-2013 at 03:51 PM.. Reason: HTML formating intermingled with text
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  #4  
Old 03-29-2013, 04:13 PM
ru4cats ru4cats is offline
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I'll be going for Tysabri infusion #36 a week from today, and I have no plans on switching since I'm JC-. As my neurologist told me in December, "If it ain't broke, don't fix it." I'm doing really well, and Ty is still better than BG 12; however, it is nice knowing there is another drug available if need be. Best of luck to all those who make the switch. I'm really looking forward to hearing how everyone is doing. Please update us regularly.
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  #5  
Old 03-29-2013, 04:41 PM
MarkLavelle MarkLavelle is online now
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I have no intention of running away from Copaxone until (a) Tecfidera is in use for at least 2 years and (b) it is shown not to have any suppressing effect on the immune system.

(a) Everyone like to talk about how it's been used for psoriasis for years, but as far as I can tell they generally haven't been taking it for years. I'd prefer to let others be the guinea pigs on this one...

(b) I've already had cancer & chemo & radiation (& a metastasis two years later), and my neuro & I agree that it wouldn't be a good idea to do anything that would weaken my obviously-poor-at-fighting-cancer immune system. Until my MS gets significantly worse, avoiding cancer tops DMTs.
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  #6  
Old 03-29-2013, 04:44 PM
JerryD JerryD is online now
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Marco,
Your post is refreshing in its candid form. You go and don't stop.
I am PPMS and there is nothing offered for my form of MS. I will be watching the roll out of this like a hawk. Good luck
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  #7  
Old 03-29-2013, 05:26 PM
jessiesmom jessiesmom is offline
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Reduced White Blood Cell Count

To Shalimar:

Please take a look at the thread entitled FDA Approves Tecfidera/BG-12. The issue of taking Tecfidera when you already have a low white blood cell count is addressed there.
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  #8  
Old 03-29-2013, 06:51 PM
rdmc rdmc is offline
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Quote:
Originally Posted by Marco View Post
I don't know a single person that would not prefer a greater chance to fight off flares or disabilities.
Hi Marco,
On another thread under medication, Jessie's mom posted the pdf for BG12 (her dad's a physician and had access to it.) http://www.tecfidera.com/pdfs/full-p...nformation.pdf

This was a paragraph in the PDF:

"The median age was 37 years,median time since diagnosis was 3 years, and median EDSS score at baseline was 2.5. The median time on study drug for all treatment arms was 96 weeks. The percentages of patients who completed 96 weeks on study drug per treatment group were 72% for patients assigned to TECFIDERA240 mg twice a day...TECFIDERA had a statistically significant effect on the relapse and MRI endpoints described above. There was no statistically significant effect on disability progression. "

So just like the long term Betaseron trial, which found that even though exacerbations were limited... "There was no statistically significant effect on disability progression."

In that respect, for whatever reason, these meds don't seem to hold off disability progression. I have no idea how that happens or any explanation of why it happens, just know that the long term Beta study, and now this shorter term trial with BG12 basically showed the same result. Disability happens even though exacerbations are limited by the med.

I was on Beta for 8 years and it controlled my MS. I went off it because of frequent infections which I surmised might be related to the Beta (it's in the fine print.) But truthfully, my MS has behaved no worse since being off it for 8 months. I'd love it if BG12 makes me feel better, especially if it wards off disability which seems to increase at a slow but steady pace, but if it doesn't it won't be a surprise to me based on what I read in that PDF.
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  #9  
Old 03-29-2013, 08:28 PM
Marco Marco is offline
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Quote:
Originally Posted by rdmc View Post
There was no statistically significant effect on disability progression.
This is the information widely distributed by Biogen.

DEFINE was the first of two Phase 3 clinical trials designed to determine the efficacy and safety of BG-12 in people with RRMS. Both BG-12 BID and TID met the primary and all secondary endpoints in the study. In addition to demonstrating a significant reduction in the proportion of patients who relapsed, BG-12 significantly reduced the annualized relapse rate (ARR) and the risk of disability progression as measured by the Expanded Disability Status Scale (EDSS) at two years compared to patients on placebo.

•BG-12 BID reduced the risk of disability progression by 38 percent (HR 0.62; 95% CI 0.44, 0.87; p=0.0050)


From my personal journey:
Last August I had a flare that took me from a normal functioning adult with some quirks to someone permanently disabled. In a matter of days, I lost my ability to drive, talk, work, walk, my dominant side swapped, I could barely lift anything at 1 lb, etc. I have worked my butt off to regain as much capacity as possible, but I am no where near where I was before.

Had that FLARE never happened I'd be out having dinner with my wife somewhere - having already worked for the money, driven both of us and been able to easily open her door, move her chair, etc. Had I been on any DMT, cheetos, jumbo jacks, or even gummy bears that prevented that flare my EDSS score would be CONSIDERABLY better.

I believe disability progression can happen with or without flares, but a flare can greatly increase that progression. It just seems like common sense that fewer flares over years would generally indicate a lower level of disability.

Then again, there is no pain with ms ... I keep forgetting that.
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  #10  
Old 03-30-2013, 07:59 AM
Jrtkahle Jrtkahle is offline
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Switching from Rebif

I have been doing well on Rebif (no flare ups) but still get injection site reactions and would prefer a pill. Also, there is some evidence of an impact on disease progression. I have filled out the paperwork for BG-12.
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  #11  
Old 03-30-2013, 09:45 AM
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Alicious Alicious is online now
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I'm on Aubagio. I will be switching for thee reasons:

Fewer serious side effects
Same mild side effects as the ones I have with Aubagio already
Greater efficacy

Also, I'm married and in my 30s, and while we are not planning on having any more kids, Aubagio is pregnancy category X, which freaks me out. Tecfidera is class C, so not safe by any means, but better all the same. Time will tell if something spooky comes out of Tecfidera, so I'm meeting with my neuro next week to weigh that threat vs the known issues with Aubagio.
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  #12  
Old 03-30-2013, 01:50 PM
REG53 REG53 is online now
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I have had 72 infusions of TY and I am jcv+ so I will be going on BG-12. Hopefully my blood work will be okay and ins. covers it.
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  #13  
Old 03-30-2013, 04:32 PM
msesq msesq is offline
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I guess I'm in group 2, with a caveat. I'm not happy with my treatment only because of the PML risk. I would stay on Tysabri if I hadn't tested JCV+. I'm still not 100% happy with the decision to switch, especially since studies have shown that Tysabri is the most effective DMD.
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  #14  
Old 03-30-2013, 06:20 PM
ColdInCO ColdInCO is offline
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I am starting BG-12 in a month. Betaseron kept me in bed and Copaxone gave me a chemical burn out of the blue one day. Third time is the charm, I hope!
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  #15  
Old 03-31-2013, 09:19 AM
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durgastiger durgastiger is offline
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Thumbs up WE CAN BE THE CHANGE WE WANT TO SEE.

OF COURSE I AM LEAVING REBIF. THE ONLY WAY WE CAN FIND A CURE I BELIEVE IS TO MAKE COMPETITION AMONG THE MEDICAL R&D INDUSTRY.

IF WE STAY PLACID IN OUR MEDICATIONS WHAT IS ENCOURAGING COMPANIES LIKE COPAXONE AND REBIF TO PROGRESS FORWARD.

I KNOW TECFIDERA IS EXPENSIVE BUT ANY WAY WE CAN FIND A WAY TO MOVE TO BG-12 WE CAN FINALLY CREATE THE DEMAND FOR MORE INNOVATION IN THE TREATMENT OF THIS COMPLEX DISEASE.

I HOPE THIS IS A WAKE-UP CALL FOR EVERY COMPANY IN THE M.S. MARKET THAT WE FOUGHT VERY HARD, WROTE MAN LETTERS AND PLEADED WITH MANY POLITICIANS, PHYSICIANS AND DOCTORS TO SEE TO IT THAT BG-12 BE GIVEN ITS RIGHTFUL OPPORTUNITY TO DO WHAT IT HAS BEEN PROVEN TO DO BEST.

MY HOPE IS THAT BY TECFIDERA BEING INTRODUCED TO THE MARKET WE WILL SE IN THE YEARS TO COME MORE PROGRESSIVE AND AGGRESSIVE TREATMENTS AND HOPEFULLY CURE FOR M.S.
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