Mexiletine vs CK-2017357

[dbltree]

I have an opportunity to participate in one of two trials thru University of Iowa ALS Clinic so I have to choose between Mexiletine and CK-2017357. I did a bit of quick research and some are already taking Mexiletine and it works wonders on cramps etc. but no evidence that it slows progression?

I'm leaning towards CK-2017357 but I'd like to hear any thoughts on these two possibles before I let them know.

Thoughts anyone?

 

[Nighthawk]

Are those trials being run near where you live only?

I wish they run trials near me here in Maryland but, it looks like PALS who live in this area like me are out of luck when it comes to trials.
Oh well.

 

[Nikki J]

The ck trial is at Hopkins and is currently recruiting

 

[Nighthawk]

Really?

Every time I go to the ALS Clinic there (at JHU) the only things they push on me are Rilutek, Nuedexta, Baclofen, and the PEG tube, etc.

When I ask about trials to them their only answer is they are not currently running any there.
That's why I'm so surprised.

NH

 

[Nikki J]

Yes it is on clinical trials site. Sent you a pm about it

 

[dbltree]

The ck trial is at Hopkins and is currently recruiting

That's good to know! I am blessed to be near UI as they have a very pro-active program and despite being in "lil ole Iowa" is one of the best hospital's in the nation.

I hope you can get involved in a trial Nighthawk!

I'm going to go with the CK-2017357as of now (sorry I should have posted in drug trial forum)

 

[Nikki J]

Hi Paul
Glad you have a strong program at your clinic. Good luck with the trial and thanks for participating!

Best wishes
Nikki

 

[MLRMLR]

I'm Sorry I do not know what ck is supposed to do? Can anyone please let me know? My husband has been diagnosed and we are going to Mayo for second opinon next week. I would like to know as much as possible to talk with them.

Thanks , Vicki

 

[hjlindley]

The cytogenetics drug, in simplest terms, amplifies the signal from the nerve to muscle tissue. There are some qualifiers for the trial. But definitely look into it. Good luck!

 

[pearshoot]

ck357 is to increase muscle strength not to slow progression, although slowing progression could be a additional benifit. i did part a that ended nov 2011 very sucessful for me. sure wish it was available. have lost everything gained plus. not familiar with mexiletine

 

[Nighthawk]

Hi hjlindley,

I read your post to this thread but, didn't quite understand what you meant by: "amplifying the signal from the nerve to the muscle fiber".

As you know, people with this disease experience ongoing denervation so, if there is no nerve to be "contacted" to amplify its signals to the muscle fiber, how is this archived?
I think you might refer to the muscles that still have some "life" left because, if it's already atrophied, then no signal will successfully be amplified. I guess.

 

[dbltree]

Thanks for the info and explanations everyone, I should be getting started on this trial within a week perhaps?

 

[Nighthawk]

My sister (one of my CALS) told me that there is a good likelihood of myself being accepted for this trial at JHU after she spoke to the principal RN at the Clinic.
I'm crossing fingers. I hoping not to be switched to the placebo group afterwards, should I be accepted.

NH

 

[dbltree]

That's good news NH! Keep me posted!

 

[hjlindley]

I didn't mean to confuse anyone when I talked about nerve signal amplification. In ALS we have a denervation of the major nerves and a reenvervation utilizing smaller nerves. It is that distinctive pattern that completes our diagnosis. It's my understanding that this amplifies the signals of the remaining smaller nerves so that the muscles don't give up. I obtained this information on a webinar from the chief medical officer of Cytokenetics, but I am not a physician.