Another one bites the dust DEX

[sadiemae]

So sick of things NOT working

http://www.marketwatch.com/story/biogen-quits-development-of-dexpramipexole-for-als-2013-01-03

 

[Nikki J]

I am beyond hearbroken. It seems like every ray of hope gets snatched away!
You are all in my prayers
love
Nikki

 

[rictak in IA]

Yup, got that call from Mayo this morning...

 

[Bhappy]

It stinks, but Dex was only supposed to slow progress, not cure.

My onset was 11-09. I've been in the study since Aug. 2011.
Dex went open label Oct. 2012. Oddly, everything for me got a bit or a lot worse / harder about the same time as real Dex started.
I think I've partly expected this for about 2 months.

 

[cervus]

How disappointing.

 

[mfhau]

Funny it was released in financial press.

 

[Luke]

How can a disease that's been around well over a century still elude and baffle even the greatest scientific minds? How do we still know so little about ALS and other neurodegenerative diseases? We're surrounded by a futuristic world full of technological wonders, a veritable science-fiction utopia come to fruition, yet people can still be offered nothing more than symptomatic treatment for a class of diseases that are are arguably the cruelest and worst known to man. It's so frustrating and unfair.

 

[Wings]

Sadiemae -hugs and love to you! Dont give up.. answers are out there just the right questions need to be asked by the right ppl... so im with lukes post above... how can it be... i do suspect the answers are a combination of therapies not just one pill... and i believe it could be a combination of several natural therapies.. i am trying and introducing things in stages -melatonin i started a month back... positive in the sense that i believe its no coincidence that i am waking up and rather than spending two hours to really feel functional - its now 20-30 mins - still stiff and slow to get going but so much better... lots of subtle changes in 'mental stamina' i have noticed slowly over the past month... next i am looking at introducing dhea -another hormone and both apparently high antioxidants... ive stopped some meds too - statins - i will have lipid levels checked this coming week.. also i was doing hrt (estrogen) but have stopped that as i was told it is 'acid' building and must keep the ph level alkaline in the body ... (and hence help keep inflammation down) anyway i think a combination of the right natural herbs/viatmins and minerals ... i wish i could find a neurologist that was also a biochemist/natural therapist that stepped outside the square and could go out on a limb with 'legal' but 'out-there' therapeutic treatments ... i read lots about a DR in the states -
Houston Texas, treating glioblastomas (excuse typos... a small specific brain tumour) ... put simply of my understanding and not in scientific terms lol....essentially he targets astrocytes (astrocytes are also affected with als just possibly a different variety) - but long story short he has a high success rate of curing glioblastomas and has been hounded by FDA in the states Hes treating them essentially with MAINLY natural therapies intravenously.... as far as i understand hes anti chemotherapy and radiation... i cant afford to wait for FDA approved trials... and lost alot of respect for some trials and the fda process after watching a few DVDs - one called "A documentary Making a killing" whilst i have never taken psychotrophic drugs it was a mind opener to me on the fda process its all big dollars -trillions in fact .. ahhhh another whole subject but i wish there was a neurologist that had the same courage as this DR in Housten has, to really bite the bullet and try some therapies ... anyone know of anyone please let me know -i will hop on a plane - most bury their heads in the sand and offer pills to help minimise discomfort of various symptoms... which i also suspect make things worse .. anyway im writing a whole lot more and may put up a blog here about it ... but please if there is a neuro out there that wants to work with me -please make contact. Im happy to be your guinea pig and will sign any form that has me 100 percent responsible. Another interesting point to add... just speaking with a friend today -she works for hospice here in New Zealand -they have noticed a massive increase in patients coming in with MND and all VERY LATE with their diagnosis... she also said its like an epidemic and dont know whats causing it ... we are meeting up again... far more to being happening with MND as far as i am concerned.

 

[Wings]

post has gone to mod -hugs and love to you sadiamae... and luke i agree 110% arggggghhhhhh

 

[frankb]

Interesting post, bhappy. I also had increasing difficulties once starting the "real" Dex. Strange.

 

[Bhappy]

Thanks Frank.

To clarify, I doubt Dex had anything to do with my declining skills. It's just an odd coincidence. 3 yrs into this nonsense is why everything is tanking.

Just hanging in there - dealing with this 1 day at a time!

 

[asantiago]

It has not been cured in part because of its complexity, but imo there are so few with the disease that there isn't enough money to be made so not enough people looking for a cure.

 

[Bhappy]

So true Asantiago.

I too am familial, the 8th person on my dad's side. Yet we are only about 10% of the als group.

The complexity of this disease (family, sporadic, military, bulbar, limb onset) and the small percent affected worldwide are the killers of research dollars.

It stinks, but I soldier on, stubbornly walking real slow w/ afos and a rollator and typing w/ the side of my ring finger!

 

[HelenL]

Seems to me with the increasing number of vets and the fact that I've read that the numbers diagnosed with MS and ALS are close... difference being that MS patients tend to live... we'd have a few more treatments by now.

I was also in the Dex trial, and didn't think for a while it was helping me at all, but with everyone's progression so different, just couldn't tell.

 

[Wings]

asantiago, im not so sure if there are 'so few' with the disease i have heard its on the increase also. Diagnosis is also very late for many... which has alot of unspoken of implications, including being more active to participate in forums, support groups etc.How often do you also here of people dying of a heart attack -stoke etc that are diagnosed with ALS ... im sure a few die of other complications and go undiagnosed also.