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sf58

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Looking for others involved in cytokinetics clinical trial for tirasemtiv to compare notes. I am a 58 yr. male living in Durango, CO. and traveling to Phoenix. (fly/drive alternating weeks) Getting tough. I've had ALS for about 15 months. The decline seemed to stall for a few weeks when I started trial end of Sept.2013, now seems like walking is tougher. going on monthly visits after Nov. 11th.
 

pearshoot

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nixa
do they test your hand strength each visit. I did part a and was successful. hang in there, the data is important
 

ColTravis

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Looking for others involved in cytokinetics clinical trial for tirasemtiv to compare notes. I am a 58 yr. male living in Durango, CO. and traveling to Phoenix. (fly/drive alternating weeks) Getting tough. I've had ALS for about 15 months. The decline seemed to stall for a few weeks when I started trial end of Sept.2013, now seems like walking is tougher. going on monthly visits after Nov. 11th.
I completed the whole protocol about a month ago. I am pretty sure I got the drug in that I had side effects associateed with Tirasemtiv. At the end of the protocol the research assistant and I compared my beginning numbers with my ending numbers and I had no progression . I think Tirasemtiv is the second big break through ALS in modern medicine history.

Complete the trail. We need to continue to move this drug forward to approval.
 

FirstMate

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Loved one DX
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My PAL participated in the study but unfortunately we don't think he was given the drug. His measurements declined at each visit but he was happy to participate.
 

sf58

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Thanks to all replies! I just returned from my 5-week visit. They tested everything, since I now have a 1-month supply of full dose and don't return for a month. They did not test hand strength each visit. But, over the 5 weeks of the trial to date, right hand went from 60 to 57. Left hand 25 to 21. I don't know if this is significant? There is no loss of lung capacity. I have essentially the same capacity since MAYO clinic visit in March, so that is good. I had fallen on Friday night and stubbed my middle finger on right hand and so my right hand might still be slightly stronger, since finger was sore for the grip test. I did the tests pre-meds on Tuesday am, then took 2 tablets and tested again 3 hrs later. Left hand declined to 17 for the second test, but right hand stayed the same. I don't have all the muscle data on the feet, ankles, etc. Nurse thought everything was generally the same 3 hrs after taking the meds. I feel like all body movements got slower, walking steps the most noticeable. best wishes.
 

iStrong

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I completed the whole protocol about a month ago. I am pretty sure I got the drug in that I had side effects associateed with Tirasemtiv. At the end of the protocol the research assistant and I compared my beginning numbers with my ending numbers and I had no progression . I think Tirasemtiv is the second big break through ALS in modern medicine history.

Complete the trail. We need to continue to move this drug forward to approval.

Thanks for the post. Anymore update from ColTravis or anyone else ? Thanks
 

ColTravis

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PALS
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02/2013
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US
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Texas
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I am now starting to see some progression in my right leg where it all started and hands. Although my OT since he has been working with this last month says he sees no change in strength in my limbS,. So I don't what is happening. May the effects of the effects Tirasemtiv are wearing off?
 

sf58

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Messages
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PALS
Diagnosis
03/2013
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US
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Durango
Did the doctors say you can continue to get the drug if it helped u? It was suggested to me that this might be possible. Did u ever find if you got the drug? I think I may be on placebo since I have what appears as a slow decline in grip strength and balance. Carrying a shopping basket is enough to throw off my balance. Reaching is difficult as both shoulders are weak. Seems like prior rotator cuff injuries are really being weakened by the disease. Thanks for communicating!
 

ColTravis

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PALS
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02/2013
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US
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Texas
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Dallas
The doctor said there was a possibility that the drug will be available to us after the study. I still don't know if I got the drug.
 

KCAE

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Oct 3, 2013
Messages
48
Reason
PALS
Diagnosis
04/2013
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US
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MD
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LP City
I had my final visit last Friday, the visit four weeks after using the drug. My grip strength steadily decreased throughout the study. My SVC, Snip and MVV all initially declined, but went back up the last eight weeks. That correlates exactly to when I switched from barely running to hard stationary cycling. My cycling continues to improve.

I may or may not have been on the drug, regardless, the data all of us are generating is important.
 
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