Old 08-07-2018, 11:44 AM #1 (permalink)
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Default Reldesemtiv

Hi All
. Just a quick update and a question.
All is OK with me for now. 8 months in and still standing, unsteady, but standing. Use a cane around the house for balance and a rollator for trips outside the house. Just gave up my driving privileges voluntarily. Can still drive OK but there is a liability issue. If I were to be involved in an accident , even if it were not my fault, and they discovered I had ALS the lawyers would have a field day.
Tire easily. Have to force feed my self to keep weight on. 3000 cal. per day. Mental function seems unaffected so far. So far ALS has been tolerable, not fun, but doable. I know things will change , but I have to remain positive.
The question: Going to start a trial of CK-2127107 or Reldesemtiv next month for 12 weeks Anyone have any experience with it?
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Old 08-07-2018, 12:07 PM #2 (permalink)
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Default Re: Reldesemtiv

Hi I moved this as it is a drug trial question. I am not sure if anyone here is doing this one but at least one member did the precursor drug trial. Good luck
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Old 08-07-2018, 06:14 PM #3 (permalink)
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Default Re: Reldesemtiv

is this an existing drug? so you ask for sharing experiences ?
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Old 08-07-2018, 08:22 PM #4 (permalink)
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Default Re: Reldesemtiv

Good luck with the trial. It looks promising. Please let us know how you're doing. I think there is also a COPD trial for that drug. They're hoping it helps with breathing (MEP)
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Old 08-07-2018, 08:59 PM #5 (permalink)
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Default Re: Reldesemtiv

Here's the topline on MEP from the last SMA trial.

Usual caveats apply: a small N and SMA isn't the same as ALS.
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Old 08-08-2018, 07:28 AM #6 (permalink)
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Default Re: Reldesemtiv

Thanks for the replies. I'll keep you posted as to progress (or lack of) as I go.
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Old 08-08-2018, 02:04 PM #7 (permalink)
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Default Re: Reldesemtiv

is this an existing drug?
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Old 08-08-2018, 05:34 PM #8 (permalink)
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Default Re: Reldesemtiv

2nd clinical trial as I understand it. 1st was stopped due to adverse reactions to the drug. It was promising so they redesigned it and are starting a second trial. Clinical researcher told me she has one person on for 8 weeks with no bad reactions. It is an 12 week trial. 450 people selected worldwide. one group gets 150 mg/day, 2nd group gets 300 mg/day, 3rd group gets 450 mg/day, 4th group gets placebo. Odds are good I get something. Not looking for miracles, but if I can help the next guy down the road, it's worth it. I start 9 Sept. My doctor just testified in front of FDA to get them to allow terminally ill people the right to choose to participate in trials not yet approve by FDA. I know it's putting a lot of trust in your doctor, but who knows what might be out there just waiting to be discovered. On the other hand it could open the door for all the quacks. Double edge sword.
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