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

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  #16  
Old 03-31-2013, 01:07 PM
Mable Mable is online now
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I'll stick with Copaxone for a while. As much as I dislike the shots, bumps, and bruises, I've had no relapses and my MRI looks better today than when I was diagnosed a year ago. So, I appear to be disease-activity free with Copaxone. And it still has few side effects.

Another reason I'm staying on Copaxone is that I have a weird phobia about swallowing pills, and you absolutely cannot chew or open up a BG12/Tecfedera pill. I think it may have something to do with inhaling the powder, which I imagine is quite dangerous based on things I've read about dimethyl fumarate used as a preservative in the past.

That said, if people start reporting that they feel less fatigued and less MS-y with the new drug, I'll probably make the leap. Tecfedera appears to be neuroprotective. Plus, Marco's story reminds me that I want to avoid my next relapse at all costs.

So, I am staying with Copaxone, but practicing swallowing pills just in case.
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  #17  
Old 04-01-2013, 09:04 PM
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ggnutsc ggnutsc is offline
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The next time I see my Dr. I will become a Tecfidera user. That will be on May 1st... incidentally, I was diagnosed last May 2nd on my birthday.

Since that time, I was put on Rebif, and relapsed in Nov/Dec. The subsequent MRI showed enough activity, that my Neuro felt it was not working for me, and sent me to an MS specialist Neuro...

My new Dr. agreed and I quit the Rebif...We both felt that Tysabri would be a good option, but I tested JC+ and he was not comfortable starting me on it. I'm not currently taking any medication because of these reasons

So now, the best option is Tecfidera. That's my birthday present this year...
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  #18  
Old 04-02-2013, 10:28 AM
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KateA2 KateA2 is offline
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I'm fairly sure I will be making the switch from Copaxone to Tecfidera...as I want to avoid flares as much as possible. 29% reduction vs. 45-50% reduction sounds good to me!

I've had 4 flares in the last 3 years, and 2 have left me with acutely-painful, permanent damage. This is a bad precedent IMHO, so as I see it, fewer flares = less disability for me.

I'm hoping I tolerate the medication well. I'm a bit nervous about taking something long-term...but it seems that newer, better treatments are coming out all the time so I'm hopeful to perhaps tread-water and something even better will come along before long.

Certainly I could commit to 3-4 years on Tecfidera therapy - the test participants appear to have done well during this duration.

In the meantime, I will try to remain as healthy as possible...only so much we can control with this crappy disease, but I mean to fight it as hard as I can.
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  #19  
Old 04-02-2013, 03:37 PM
HETA78 HETA78 is offline
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My neurologist and I have had this discussion. I absoutely hate the shots but I can tolerate them because I've been feeling really good on Copaxone. Our plan, so long as I continue to do well on Copaxone, is to let others try out the Tecfidera, to see how they do on a long term basis, and go from there. I'm hoping a year or two.
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  #20  
Old 04-02-2013, 09:36 PM
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allHailye2 allHailye2 is offline
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i'll be asking my neuro about tecfidera at my next appt. i've been on rebif for 13 years now and it's getting harder and harder to do.

it's not so much the site reactions, but the knots it's formed under my skin. just tonight i stuck myself and the needle went in, but the med wouldn't.

i'm so tecfidera ready.
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  #21  
Old 04-03-2013, 09:05 AM
BrendaV BrendaV is offline
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Smile going off tysabri and on bg12

I was initially was on avonex for 7 yrs. Tysabri 5 yrs. Built antibodies so specialist is switching me to bg12. I just got tysabri Friday so at the end of April I'm to do a round of prednisone. He said a lot of people coming off tysabri have a flare so this will hopefully nip it before I get to start bg 12. Looking forward and trusting God.
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  #22  
Old 04-05-2013, 04:34 PM
lwanda lwanda is offline
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Tecfidera

Thanks for all the post concerning the BG-12. I have been watching and reading current news, and it is finally here ( FDA approval). It is only a matter of time before I will be having a discussing with my Doctor on switching from Avonex to Tecifidera. I know I will prefer the pill over a shot. Hope it all works out.
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  #23  
Old 04-09-2013, 03:16 PM
Punky Jo Punky Jo is offline
 

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Thumbs up Tecfidera

I just finished my last Tysabri. I have had 89 treatments and test jcv+. I see my doctor on April 17th and can not wait to be prescribed a safer form of a DMD. Pills are consistently in your system. As long as you take it as prescribed. The shots and Tysabri lose there effectiveness and is not in your system all the time like Tecfidera. I have to believe I am making the right choice.
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  #24  
Old 04-09-2013, 03:49 PM
amandarianne28 amandarianne28 is offline
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I want to ASAP

But...my neuro is an idiot. Just today he told me it wasn't approved. Seriously.

Now Im researching my butt off to bring him proof and a good argument why I should switch from the Gilenya to Tecfidera. Mainly for my lifestyle. I get sick a lot and I have school aged children so a drug like Gilenya that suppresses the immune system isn't a good fit for me, in the month and a half Ive been on it I have caught a stomach flu from my kids twice despite quarantining myself in my room and my husband caring for them. While Tecfidera suppresses the immune system some it also works in other ways that show promise in slowing down physical imparement and lesion formation that Gilenya has not.

Wish me luck, hopefully soon I will be among the users of this drug. Gilenya was sold to me as a last chance drug as the injectables never worked and after 2.5 yrs on Tysabri I tested JC+ and now I seem to be locked into a treatment I don't like because my neuro doesn't research anything past what he likes/thinks is best for his 5 (Im not kidding, Im 1 of 5 MS patients he cares for) patients.
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  #25  
Old 04-09-2013, 04:20 PM
zoysia zoysia is offline
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Tecfidera and me

Jumping through hoops and more hoops after waiting so very long to even attempt to get on this drug....

Got call from neurologist this morning saying that my bloodwork came back with higher-than-normal TSH (thyroid stimulating hormone) and he wants me to get that cleaned up at my endcrinologist's before I start this drug.

No problem getting blood drawn for a CBC or D level test, but that *** TSH level is throwing me off, big time. Actually, my endocrinologist has been watching that level for a good 2 or 3 years now, but apparently this time, it's just too high for my neurologist to be comfortable with the Tecfidera and its newness for MS etc. So, I wait.

I don't know whether to cry, or scream, or just be happy that I'm on the pathway of this what's-going-to-be a very long process for me. I went to my neuro in April 2012 asking to be "put on" something! He said we'd wait for this "new" drug coming down the line (given my track record); so, I wait. And I wait--coming out Nov/Dec 2012. Bah! And I wait more.... You see? I failed with Rebif back in 2007 (was completely debilitated for 2 days from that drug), failed with Copaxone in 2008 (depression to the point I wanted to kill myself), and just didn't attempt any others. Nature has had her way with me since. She has been kind (in my view) but from my dh's standpoint it hasn't been good. He wants the "old" me back, and is having trouble accepting the "new" me. It also seems that he's expecting this, the BG-12, to "cure" me. Sad.

So, I wait.
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  #26  
Old 04-09-2013, 07:45 PM
Marco Marco is online now
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I had my last IVIG infusion yesterday. My neuro wrote my script for BG12 and now the waiting game begins.

I am hoping to hear from the Aetna specialty pharmacy before the end of the month and have drug in hand in early May. That should give me 6 weeks on the medication before we hit 100+ degrees.
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  #27  
Old 04-09-2013, 08:01 PM
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durgastiger durgastiger is offline
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When are pharmacys shipping?

I guess this is the question on all our minds.
When will our pharmacys know when our Tecfidera is shipping.

Anyone on Rebif not doing their injections in anticipation of Tecfidera arriving soon?
I was told that I don't have to do any more injections.
Is that a bad idea?
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  #28  
Old 04-10-2013, 01:59 AM
deedlebug deedlebug is offline
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I intend on switching. I was on Tysabri, originally tested JC Virus Negative, but somewhere along the way ended up JC virus positive. I've been hearing about BG12 for about a year now, and have been looking forward to it. Unfortuately I'm not on any DMD right now because we are going to try and conceive, but my intent is to start Tecfidera/BG12 after either having a baby, or giving up trying to have one!
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  #29  
Old 04-10-2013, 02:20 PM
Myoak Myoak is online now
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Hi amandarianne,

If your neuro has only 5 MS patients he may not be an MS specialist. I see the Anchorage Multiple Sclerosis Center is on Providence Dr. maybe they would have a doctor more in tune with your needs? Good luck.

Hi Zoysia,

It might be worthwhile to research LDN. Since it increases endorphin production which in turn helps the immune system work more properly, it may improve your quality of life by making you feel better and also could benefit MS. Here is a link, if you are interested:http://www.ncbi.nlm.nih.gov/pubmed/19041189 You can always Google LDN for more info. You'll likely learn more in 5 minutes than your doctor would be able to tell you about it. Best to you.
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  #30  
Old 04-13-2013, 12:10 AM
betz betz is offline
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What does this mean:
"I recently found out that I'm JCV+. "
Thanks,
Betz
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