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

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  #1  
Old 08-05-2013, 04:30 PM
Tawanda Tawanda is online now
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Exclamation BG12 death? Bummed out.

My neuro and I were going to discuss me going on BG12 at my recent appointment. When I got there he said that there had been one death of a patient, but that it was still being investigated. Did anyone else hear about it? I was frozen. I didn't ask if this was the dreaded "PML" thing, but said I will stay on Avonex until I know more.

I just emailed him to ask if he could send me an article or something on it. At first blush, my doctor did seem to indicate that he thought the death was due to the drug rather than "something else". He agreed that I should probably just continue on my Avonex and that he has pretty much given the same advice to other Avonex users who seem to be pretty stable and can live with the whole shot thing (I can).

Bummer. I thought this was a drug that was around for a long time in Germany to treat psoriasis. Did they tweak it too much when they decided it would be a good drug to give us MSers?
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Old 08-05-2013, 05:18 PM
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Tawanda - there was another thread about this recently - http://www.msworld.org/forum/showthread.php?t=128552

I'd read it all the way through.
Hope this helps.
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Old 08-05-2013, 06:35 PM
MSer102 MSer102 is offline
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That link is NOT about the death of the woman who took Tecfidera!

The warning about not crushing Tecfidera because the medicine can cause respiratory problems if breathed in is important but it implies that the woman died because she inhaled Tecfidera. There is NO report that that's what happened. So far the news is that there is not yet ANY know connection between Tecfidera and the woman's death.

The woman who had been on Tecfidera died from pneumonia, apparently aspiration pneumonia which is more common in people with MS. The statement from Biogen said that she was known to have irritable bowel and previous respiratory infections and bronchitis.

She might have died from a weak respiratory system and aspiration pneumonia due to MS maybe she didn't. Maybe she died from an infection maybe she didn't. Maybe she died from breathing in Tecfidera maybe she didn't. We don't know anything else about her and it isn't known yet what caused her pneumonia. So it's important not to jump to conclusions or start rumors!

Again that thread is not about the woman who died or why she died.
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Old 08-05-2013, 08:08 PM
Tawanda Tawanda is online now
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Quote:
Originally Posted by MSer102 View Post
That link is NOT about the death of the woman who took Tecfidera!

The warning about not crushing Tecfidera because the medicine can cause respiratory problems if breathed in is important but it implies that the woman died because she inhaled Tecfidera. There is NO report that that's what happened. So far the news is that there is not yet ANY know connection between Tecfidera and the woman's death.

The woman who had been on Tecfidera died from pneumonia, apparently aspiration pneumonia which is more common in people with MS. The statement from Biogen said that she was known to have irritable bowel and previous respiratory infections and bronchitis.

She might have died from a weak respiratory system and aspiration pneumonia due to MS maybe she didn't. Maybe she died from an infection maybe she didn't. Maybe she died from breathing in Tecfidera maybe she didn't. We don't know anything else about her and it isn't known yet what caused her pneumonia. So it's important not to jump to conclusions or start rumors!

Again that thread is not about the woman who died or why she died.
Maybe all this conflicted information is why my neuro. didn't say too much about the incident to me, but if he happens to shed any further information on it, I'll share it here...I was in a big fat hurry to get my daughter as I dropped her off at my husband's office. Otherwise I would have probed for more info., which is why I am contacting him again now.

I suppose right now he's taking the "better safe than sorry" approach for now with me. He did mention that many of his patients did not experience any side effects after a month or so, so he is obviously prescribing it.

It was my belief that this was an old drug, but new to M.S. so if there were any problems, they would have been worked out by now. My worry is that a person with M.S. might react "differently" to this drug for whatever reason, so I will wait it out with the Avonex shots a little longer.
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Old 08-05-2013, 08:21 PM
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Seasha Seasha is online now
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Quote:
Originally Posted by MSer102 View Post
That link is NOT about the death of the woman who took Tecfidera!

Again that thread is not about the woman who died or why she died.
MSer102 - I agree with you. I posted the link to that thread and stated that Tawanda should read the entire thread through in which the last post had a link that dispelled the report of a woman's dying from Tecfidera. Here it is again - http://www.firstwordpharma.com/node/...#axzz2ayvctKdl
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Old 08-05-2013, 09:19 PM
Myoak Myoak is offline
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The thread contains a link to information about the young woman who died. She did take tecfidera and she did die so questions will naturally be raised about possible relationship between the two.

The thread Seasha referenced is about the young woman with respiratory problems, tecfidera (cantaining dimethyl fumarate proven to cause respiratory problems), and possible relationship.

Remmy9111 posted, “Here is a link that gives more information on the patient's death in case anyone reading about this for the first time needs a reference.”
http://www.firstwordpharma.com/node/...#axzz2ayvctKdl

We don’t know if the woman who died inhaled particles of tecfidera containing dimethyl fumarate. We do know the European Union banned dimethyl fumarate from consumer goods in part because it caused “acute respiratory difficulties” in some people.

The lady who died reportedly had respiratory problems and as such should have been alerted to the possible danger breathing tecfidera might present to someone with respiratory problems, IMO.

Unfortunately, Biogen’s provides no guidelines for neurologists to alert patients in regard to respiratory problems that I have been able to find. So it is good to talk about the issue in a rational way on this board, read available background information, and speak with your doctor.

It doesn’t seem likely, IMO that we will ever know if this young woman opened capsules to cut down on dose, or if she opened capsules to sprinkle it on food attempting to minimize side effects, or for whatever reason. Unless someone in her family speaks up, we will never know. It is understandable that Biogen's position would be that tecfidera had nothing to do with her death but I doubt if they will ever be able to prove that, either.

We know dimethyl fumarate has caused acute respiratory problems prompting an EU ban and we know this young woman died from pneumonia. But we don’t know if they are related in this tragic death. We do know they could be related, we see how that is possible.

We understand the why behind Biogen’s prescribing warning not to crush, chew, or sprinkle on food better because we understand the why behind the EU ban. Breathing the active ingredient in tecfidera, dimethyl fumarate, caused “acute respiratory difficulties” in some people in the EU and significantly enough that they banned it in 2009 and later made the ban permanent.

It is entirely possible tec had nothing to do with this death. It is entirely possible tec had everything to do with this death. We may never know but at least we are aware of the possibility.

As MSer102 cautioned we should not jump to conclusions or start rumors but we should digest information.

Again, the thread Seasha provided a link to does discuss a possible reason for this young woman’s tragic death, hopefully in an informative way which may help avoid health problems, especially in those with respiratory issues.
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Old 08-22-2013, 08:45 PM
rgngsmom rgngsmom is offline
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According to my Neuro, it has now been made "public" that the womans white blood cell count was very low prior to her taking the TECfidera, and that was the main contributor to her death.

That being said, pt's may want to ? their Neuro's about getiing blood cell counts prior to starting ANY new DMD for MS.

Best wishes to one and all~
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Old 08-23-2013, 11:17 AM
Tallred Tallred is offline
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i took tecfidera for 9 days and caused me significant lung and heart damage can see my feed
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