tirasemtiv

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bleecher

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Learn about ALS
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ca
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los angeles
has anyone had success with this drug in the latest trial?

i have seen some reports of it possibly working in previous trials but these trials were so short in duration.
 
Will let you know... I start the IIb trial this Wednesday, hoping not to get the placebo, but everyone gets the real drug the first week...
 
I considered the trial, but clinic is three hours away. You don't get to continue after the trial so it seemed to troublesome for temporary gain. Plus the risk of placebo.
 
I went and was screened for the trial yesterday, the screening took 3 hours and I will have to go an hour away once a week for 14 weeks for a 50-50 shot at getting the active ingredient. But if we don't do it how do we get anywhere? So I'm willing to take the risk of the placebo, take the weekly blood draws, drive an hour each way, keep the daily Journal, and we'll see what happens. At least it's not running in the middle of winter, so driving won't be so bad. I'll keep you guys posted.
 
Thanks, was too much for me.
 
Do you guys know what states this is being tried in?
 
I just talked to my ALS doctor this morning and will be doing a pretest with him next week. I'm not sure if I'm going to be doing it, but I am only half an hour away from the clinic so it will be easier for me to get to than many of you. Has anyone been in the previous phase and notice an improvement?
 
Helen - in the 'cytokinetics?' thread, pearshoot stated he was on the first trial for Tira and it worked. He posted lb strength in each hand before during and after the trip.
 
In am in week 3 of the 20 week program. My doses (placebo or real drug) was increased to one 125mg tablet in the morning and two 125mg tablets in the evening.

Even though for the visit today, they just drew blood, I asked if they could give me the dynamometer so I could test my hand strength, left hand pre trial was 83lbs, today was 90lbs, right hand pre trial was 53lbs, today topped out at 60lbs.

Hoping I am getting the real drug and if so, definitely working...
 
Well I went on weeks zero, and found the side effects quite interesting. My blood pressure dropped to 82/42 so I looked like a ghost, had absolutely no energy, and my memory went. Luckily my lawyer didn't do anything after our conversation because I don't think I made any sense. I was supposed to go back for week one except in 6 inches of snow pretty much shuts down Virginia. Since I have sufficient drug, I'm going to take it as directed until my visit next Monday. So far, I don't see any change in strength or stamina. Will await and see. I will continue to the study simply because if we don't will never learn anything. And we all need to learn something soon. Just hope I get the real stuff is damn side effects were off!
 
I am on week 3(375mg per day). I feel that I have more strength and can stand longer and more endurance. My legs are still stiff as boards so I am guessing it does not help with spasticity. Obviously I do not even know if I am on the real thing or not. HSS(in Manhattan) is only a half hour away and they have valet parking right next to the elevator that takes you directly up to the dr office. They pay for the gas, tolls and parking so it is a no brainer for me. Gives me something to do. I'll keep posting....
 
I have now taken 2 weeks of the active due to a snowstorm that prevented me from getting there last Monday. I am finding the side effects quite daunting. My blood pressure is so low on this drug that I am unable to do much of anything. My brain functions are scrambled, I am forgetting conversations, and I'm having great difficulty reading. My G.I. tract is bloody miserable and I don't sense any increase or any improvement. I'll wait and see what tomorrow brings me, but unless there's some improvement I'm unwilling to be locked in the house for 14 weeks during the trial. My blood pressure is so low it's unsafe for me to drive. I hope others are having a better experience with this drug. I have things I need to do and can't. Will let you guys know tomorrow what we decide.
 
Well I am officially out of the study. My normally low blood pressure was lowered to a point that is not safe or healthy. I realize that low blood pressure is not common, but my family has always been slightly hypotensive. This drug just lowered it way too much, and, as might incredibly darling and observant husband noticed, the lack of oxygen my brain was making me incredibly stupid. So I'm sorry I wasn't able to help out but I'm extremely glad to starting to feel like a human being again.
 
Hj, you did help out!

Thank you for your participation in this Trial.
 
Literally just got back from my Visit 5 appointment. this is the one where they do all the tests, take the drug, wait 3 hours, do all the tests again. Worse part was 3 blood draws emoticon sad

I recorded my results and here they are before and after the drug, the results are at worst the same I had when I went in for the evaluation to see if I have qualified (almost 2 months ago), so not sure what to make of it... Neurologist was encouraged to see that I haven't lost any strength after that period of time.



Test 1 (Before Drug)

SVC - 96%

EMG - Normal

Sniff Test - 75

MVV - 113 liters/min

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

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 103sec)

Left Hand Strength - 91.7 (held for 120 sec)
 
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