Cytokinetics ?

[rbergs]

Hello- I have just started week 1 of the study, that is the week you are randomized, 50/50 chance of placebo. Your first visit can be lengthy, muscle, respitory an blood draws to see if you qualify. Second visit is after the blood and urine analysis is OK. If it is, you start week 0. You will take the drug twice a day to see about tolerance and side effects. Side effects, if I had any, were minor just body acheness. I did alot of stretching and took a few ALIEVES.

Some days with ALS are better then others but positive things that I noticed are a better sence of balance and one night I woke up feeling a tingling sensation in my foot, I was able to wiggle my toes after the sensation subsided.

I live near Indianapolis, the ALS clinic and tests are done at the new Neurology Center in INDY. If you have a cofirmed ALS diagnosis, I strongly recommend you participate in this study. For contact info go to "clinical trials.gov" search for open ALS trials.

 

[daigs]

I'm being enrolled now. Just waiting to make sure my blood work comes back ok.

 

[pearshoot]

its been 16 months since i finished part a. my test this week lh 0lbs rh 10lbs it has been steady during this period. will always wonder where i would be if i was allowed to stay on ck-357. wish others same success i had

 

[rbergs]

Hi- I am in week 2 of the trial, 3 pills/day. During week 0, I sensed better balance and the swelling in my feet definitely improved. I have not noticed any improvement since week 0. However, I have been doing alot more strectching. It feels good and I think my range of motion is slightly better. Based on week 0 my guess is that I am on the placebo. Has anybody tried to get info about purchasing CY2017357. Perhaps through a supplier outside the USA or a compassionate approval from the FDA. I am going to pursue the possibilities. If you have any info please let me know.

Randy Bergs

 

[pearshoot]

if you find a source let me know. was in part a and it worked good for me, significant strength increase wished it was a longer trial

 

[bleecher]

does anyone know if this tirasemtiv lasts a long duration? has anyone know for sure they have got the real drug and not placebo in this recent study?

 

[rbergs]

I think there is an upcoming fda approval request? Does anybody have info?

 

[bleecher]

rbergs, did u say u were on the placebo?

 

[Nighthawk]

does anyone know if this tirasemtiv lasts a long duration? has anyone know for sure they have got the real drug and not placebo in this recent study?

As in any drug trial, there is no way the patient can tell for sure whether he/she is on placebo or the real thing.
Only the people handling the trial may know that info for sure.

 

[rbergs]

Not sure, if i have anyside effects it is fatigue, tired all time. My guess is placebo.

 

[pattyb]

Just was wondering how its going with the trial. My brother started it but after 3 days of taking the drug he could hardly stand up or walk, slurred speech and couldn't use his hands. He stopped taking it and thank god everything went back the way it was before. Wasnt right for him. Good luck I hear its gotten good results

 

[hn7609]

Hard to say exactly how it is going. I am up to 4 pills per day, after next visit they will up the dosage to 6 per day.

So far I feel no side effects & have noticed no increase in muscle efficiency. Visit after next is when they will redo the strength & breathing tests. I'm curious to see if there is any change. My gut tells me that I am still taking little steps towards the inevitable end.

 

[pearshoot]

the positive results i received did not last long but part a only lasted four weeks hope every one has posive effect like mine

 

[mbmurray]

Hard to say exactly how it is going. I am up to 4 pills per day, after next visit they will up the dosage to 6 per day.

So far I feel no side effects & have noticed no increase in muscle efficiency. Visit after next is when they will redo the strength & breathing tests. I'm curious to see if there is any change. My gut tells me that I am still taking little steps towards the inevitable end.

Here are my results after my visit where they redid my strength tests. Worse part was 3 blood draws

Not sure if I am on drug or placebo, right shoulder is definitely weaker, but breathing and hand strength for me is same or very slightly better as compared to values taken when I took tests to qualify for program (2 months ago)... Don't go back for another month now.



Test 1 (Before Drug)

SVC - 96%

EMG - Normal

Sniff Test - 75

MVV - 113 liters/min

Right Hand Strength - 59.1 lbs (held for 90 sec)

Left Hand Strength - 84.1 lbs (held for 120 sec)


Test 2 (3 hours after drug)

SVC - 91%

EMG - Normal

Sniff Test - 77

MVV - 123 liters/min

Right Hand Strength - 56 lbs (held for 103 sec)

Left Hand Strength - 91.7 lbs (held for 120 sec)

 

[jpsteeler99]

I had clinic and visit 5 today and was poked with a needle 6 times. 2 times they missed. My scores are down slightly since I started the study. I've suspected I was on the placebo since I was randomized. The side-effects, although mild, went away as soon as I was randomized. I felt no gains in strength even taking 500mg per day. Todays test results confirmed that. Now I only have to go back 3 times over the next 2 months so I will finish the study. I have not seen a real good response from this trial. It seems most people can't tolerate the drug. I am not expecting to see this drug make it. My clinic dr did say they were starting a new trial for a brand new drug starting possibly this Summer. I told him to put me on the list. It is an infusion drug and would require weekly infusions. He wouldn't tell me anymore.