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

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  #1  
Old 05-06-2013, 03:05 AM
mellow mellow is offline
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tysabri vs tecfidera

Well after almost 12 years on Avonex, my latest MRI shows changes and new lesions, so I need to switch to a new medicine. I'm wondering if anyone has opinions or info about which might be more effective, tysabri or the new tecfidera (still waiting for lab work to see if I am JVC + or -). I'm worried about forgetting to take a pill twice a day, but am also worried about the potential side effects of tysabri. Any input welcome. Thanks!
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  #2  
Old 05-06-2013, 08:21 AM
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BigA BigA is offline
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Were you stable for 12 years? That's not a bad result on Avonex. Why are you considering a jump to Tysabri and not to Gilenya or Tec? Just curious.
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  #3  
Old 05-06-2013, 11:22 AM
Mkc3031 Mkc3031 is offline
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I couldn't tolerate the other drugs, highly allergic to ago ex, hence no rebid, did copaxone for a year, had rare, unusual side effect had to stop, didn't take anything for past eight years. This past year, spine lesions. Can't do girl yenta cause of heart problems in my family, was approved for aubbugio, decided to wait for bg-12, tecfidera. Never wanted to even try tysabri, it goes against how much chemo you can have in your lifetime and I don't want to risk that, just me. Tecfidera, did a lot of research on BG 12, way less side effects, and seems to help more than any. Other disease modifying drug. Granted you take any of these on blind faith that hopefully you're in the percentile they actually help. I've been on tecfidera for ten days now, knock wood, no side effects. Which for me is almost abnormal to even say so knocking wood again. Good luck to you in whichever med you choose!
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  #4  
Old 05-06-2013, 12:28 PM
meburnett2004 meburnett2004 is offline
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Sorry new to MS. What does JCV mean?
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  #5  
Old 05-06-2013, 01:01 PM
Myoak Myoak is offline
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Hi Mellow,

I will list the results of two Phase 3 trials involving Tecfidera (BG-12) taken twice a day (BID). And, I will list the results of Tysabri from a Phase 3 trial. The results in all of these trials are compared to placebo. You should understand that it is not entirely legit to compare meds using different patient populations in different trials.

The best comparisons can be made when both meds are given as part of the same trial using the same patient population. Rarely do drug companies want to do that so we are left with an imperfect way to compare meds. Hope that made some sense. Basically, comparing meds to placebo is not perfect but it is all we have when head to head trials are not done.

BG-12
DEFINE PHASE 3 TRIAL RESULTS:
Taken twice daily (BID)
53% annual reduction in relapse rate
44% relapse rate reduction at 24 months
21% reduction in disease progression
38% reduction in disability progression
85% reduction in the mean number of new or newly enlarging T2 hyperintense lesions
90% reduction in gadolinium enhancing lesions
72% reduction in T1 hypointense lesions

CONFIRM PHASE 3 TRIAL RESULTS:

Taken twice daily (BID)
44% annual reduction in relapse rate
34% relapse rate reduction at 24 months
21% reduction in disability progression
71% reduction in the mean number of new
or newly enlarging T2 hyperintense lesions
74% reduction in gadolinium enhancing lesions
57% reduction in T1 hypointense lesions
30% reduction in brain atrophy

The serious or adverse events for patients on BG-12 and placebo were statistically similar.
Common side effects were Flushing in 38%, Upset stomach, diarrhea, nausea, abdominal pain and
headache. The studies revealed a decrease in side effects for most patients after one month on therapy.


TYSABRI
AFFIRM PHASE 3 TRIAL RESULTS

68% annual reduction in relapse rate
81% relapse rate reduction at 24 months
42% reduction in disability progression
83% reduction in the mean number of new
or newly enlarging T2 hyperintense lesions
92% reduction in gadolinium enhancing lesions

Tysabri has superior effectiveness, twice the % reduction in disability progression; however, it also has risk of PML in JCV+ patients.
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  #6  
Old 05-19-2013, 03:41 AM
mellow mellow is offline
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got more info

thanks for your replies and input! (and for the new person, JCV is the JC virus - if you have been exposed to it, which they can determine from a blood test, you have a higher likelihood of developing the brain infection (PML) from the use of Tysabri - however, the risk is very, very low in either case). And yes, I was stable for 12 years.
I got more info from a neurologist who said that Tysabri is the most effective MS drug out there, followed by Tecfidera, and then the regular injectables (Avonex, etc). He also said Tysabri is the only approved medication that actually can bring about some improvement and that very few people have side effects. Also, they have had many people on Tysabri for over 5 years now and there are no apparent new long-term side effects.
So I am likely going to go with the Tysabri.
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  #7  
Old 05-29-2013, 09:44 PM
thinkpink thinkpink is offline
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Tysabri vs Tec

I have had over 80 doses of Tysabri. I love it. More energy, decreased sx. The only reason I would consider going off it is because my neuro is concerned about my risk of PML due to JCV and so many doses. Even then, I will probably try to go back on in a year (neuro said body resets itself and the risk won't be as high then).

So in my humble opinion, I would go on Tys. if you can.
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  #8  
Old 05-30-2013, 12:21 AM
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I spent three plus years on Tysabri and then went back to Copaxone which gave me better results. Copaxone is safe and has a long track record. Is that an option for you? I took Copaxone for 18 months, switched to Tysabri and stayed for more than three years but the symptoms were worse for me. So I went back to Copaxone and have been taking it more than three and a half years since. I'm looking forward to the new formulation for three times a week for Copaxone and I plan to stay with it as long as I an stable.
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  #9  
Old 05-30-2013, 12:53 PM
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regi girl regi girl is offline
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I CAN ONLY SPEAK FOR TYSABRI, I DON'T HAVE EXPERIENCE WITH THE OTHER.

I AM JVC+ BUT I'M HAVING WONDERFUL LUCK ON TY. WHILE I STIL HAVE THE MS SYMPTOMS, I AM ABLE TO RECOVER FROM THEM VERY QUICKLY. WHERE THE FATIGUE MAY HAVE PUT ME TO BED FOR 2 TO 3 DAYS, NOW SOMETIMES JUST A GOOD 12 HOUR NIGHT SLEEP TAKES CARE OF IT AND I'M ABLE TO WORK THE NEXT DAY. I WAS OFF WORK YESTERDAY BECAUSE I DID SO MUCH DURING MEMORIAL WEEKEND (YES I KNOW BETTER, BUT IT FELT SO GOOD TO BE OUT ON THE LAKE LIKE NORMAL PEOPLE) BUT IT WAS ONLY A DAY AND I'M FINE TODAY. A YEAR AGO I PROBABLY WOULD HAVE BEEN OFF THE REST OF THE WEEK.

I SUFFERED FROM DIZZINESS TERRIBLY AND IT HAS HELPED THAT SO MUCH. I AM ABLE TO GO BOATING AGAIN AND DO THE THINGS THAT I LOVE THAT I HAVEN'T BEEN ABLE TO DO IN THE PAST FEW YEARS.

THE FATIGUE ALSO SEEMS SO MUCH BETTER.

HOWEVER, NOW THE DOWN SIDE, SINCE I AM JVC+ I HAVE A DECISION TO MAKE DO I STAY ON IT AND TAKE MY CHANCES OR GET OFF. AND IF I GET OFF THE DRUG WHAT ABOUT THE REBOUND EFFECT, THAT SCARES ME TO DEATH ALSO.

I HAVE A FEW MONTHS BEFORE I HAVE TO MAKE A DECISION WITH MY NEURO BUT THE SITUATION I AM IS CAUSING ME STRESS, I DON'T WHAT TO DO. SO I WOULD LOOK INTO THESE ISSUES ALSO.

I WAS NOT ABLE TO TAKE SOME OF THE OTHER CRABS SO I THINK TY IS WONDERFUL BUT IT COULD COME WITH SOME COSTS.

IT'S A PERSONAL DECISION, GOOD LUCK
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  #10  
Old 05-30-2013, 01:40 PM
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durgastiger durgastiger is offline
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Thumbs up @Mellow

Interferons don't work for me anymore. After 12 years did your Neurologist ever test you for interferon neutralizing anti-bodies?

My new neurologist did and I was way above normal for Rebif/interferon anti-bodies.You should get blood-work done to see if you are as should every MSer that is on an interferon treatment.

Here is a suggestion/ personal game-plan.
- I am JC+ switched from Rebif to Tecfidera.
- Staying on Tecfidera until new Tysabri comes out for PPMS, 1-2 years.

- Stay on Tysabri for 1-2 years until next best medication comes out. Hopefully it is anti-lingo-1

- 2 years Tecfidera
- 2 years tysabri
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  #11  
Old 06-30-2013, 04:28 AM
mellow mellow is offline
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Thanks for more input/discussion! I have had my first Tysabri infusion and zero problems or side effects. I had it and then went to work straight from there - no issues at all.
I did not ever have the blood test for interferon neutralizing anti-bodies - I will have to ask my neuro about that. I do have my personal suspicions that the reason my Avonex may have decreased in effectiveness for me over the last year was because I was taking prescription anti-inflammatories (and some other medications I had never taken before) for other other health issues for close to a year (I am off the anti-inflammatories now). So I suppose if I ever have issues with the Tysabri I could maybe go back on an interferon, but we are all so blessed that there are so many choices of medication now and more in the pipeline, that who knows what may be available should the need arise for a change.
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