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Old 09-22-2013, 04:28 PM   #1 (permalink)
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Default Acthar

Does anybody know about Acthar? Has anybody been administered it?

I am considering being a part of the phase 2 trail, there is little information available on this drug and ALS.

thanks, col

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Old 09-24-2013, 04:07 AM   #2 (permalink)
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Default Re: Acthar

Actually, the ALS preclin (mouse) results are all over the Web. Marketed for other indications now. Check out Questcor's site for the current labeling, safety issues, etc. I believe the Phase II study you are considering is dose-finding and testing 4 dosages in ALS.
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Old 09-24-2013, 07:43 PM   #3 (permalink)
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Default Re: Acthar

From an earlier post this year
Quote:
Originally Posted by R9L13026 View Post
Yes on Questcor's web site they seem to have approval to treat for 19 ailments. Maybe their flagship product Acthar will somehow help to stop the progression of nerve cells from dieing in ALS.



They don't really know how acthar works. They want 40 PALS to participate and see if they can tolerate the drug.



Since it helps with MS relapses, Infantile spasms, and weakness in the skeletal muscles, maybe help treat ALS?
Txgirl was trying to get in on that trial. I'm going to have to learn how to link back to other posts one of these days. I hope both of you guys get in.
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Old 09-30-2013, 06:15 PM   #4 (permalink)
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Default Re: Acthar

Hi Everyone,
Just came acrossed this post. My dad is supposed to be getting Acthar injections in about three -4 weeks for his ALS. He just had his flu shot this weekend and they wanted it to be in his system for awhile first. Dad is supposedly one of only 40 in the nation that will be partcipating in this trial.
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Old 09-30-2013, 07:10 PM   #5 (permalink)
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Default Re: Acthar

I hope it shows some effects for his AlS symptoms. Good luck looking forward to following his progress from your posts! as well as others. Sounds like the Col may give it a try? I think it was Txgirl was also trying to get into this trial.
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Old 09-30-2013, 07:26 PM   #6 (permalink)
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Default Re: Acthar

Quote:
Originally Posted by R9L13026 View Post
I hope it shows some effects for his AlS symptoms. Good luck looking forward to following his progress from your posts! as well as others. Sounds like the Col may give it a try? I think it was Txgirl was also trying to get into this trial.
I wanted to participate in this trial but my breathing is already affected and I am on a ventilator. Unfortunately PALS that are on a ventilator can not participate in the Acthar trial.
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Old 09-30-2013, 09:35 PM   #7 (permalink)
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Default Re: Acthar

Sorry bout that. I hope the breathing exercises/ventilator are helping to keep you comfortable?

We can still pull for Kim's dad.
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Old 10-01-2013, 01:02 AM   #8 (permalink)
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Default Re: Acthar

Yes, definitely pulling for Kim's brave dad and everybody that is participating in this trial. Bless them all!
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Old 10-17-2013, 08:54 AM   #9 (permalink)
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Default Re: Acthar

My husband has been selected for this trial at the Jacksonville Mayo ALS clinic. So far he has passed all the required criteria and will probably be starting November 6th. There's no placebo group, it is a dosing trial with 40 people nationwide, four groups of 10. Each group receives a specific dosage and stays with it through the trial. Hoping it shows some promise. It's no cure but it may aid in slowing progression. Would love to know if others on this forum are entering the same trial.
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Old 10-17-2013, 04:00 PM   #10 (permalink)
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Default Re: Acthar

My dad just got his first injections today of Acthar. He was tired when I talked to him after getting a bunch of tests run at the clinic today. I thought he said he will be getting injections twice weekly. I will try to keep everyone informed on how it is doing.
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Old 10-30-2013, 12:27 AM   #11 (permalink)
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Default Re: Acthar

I am not in a trial but am trying Achtar off label, and I will report its effectiveness.
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Old 11-05-2013, 01:56 AM   #12 (permalink)
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Default Re: Acthar

ColTravis did you get into the trial?

Kim any updates on how the drug is affecting your dad?

ECpara how is your husband doing?

Guess FA is gone anybody else taking it off label? Anybody else here get on the trial?
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Old 11-05-2013, 03:08 PM   #13 (permalink)
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Default Re: Acthar

My dad hasn't experienced any bad side affects from the trial yet. It's really too early to tell if its working yet or not. He says he gets a bruise everytime he gets injected because he's on a blood thinner. But, they watch him really close. I will keep everyone posted as I find out more.
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Old 11-06-2013, 06:50 PM   #14 (permalink)
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Default Re: Acthar

I am not in the trail yet. I get screened for the trail next week
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Old 11-07-2013, 09:09 AM   #15 (permalink)
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Default Re: Acthar

Yay, my husband started the Acthar drug dosage trial yesterday! Wow, what a long day at the lovely Jacksonville, FL Mayo Clinic. Tests, tests, questions, questions, and more tests. His pulmonary function was 85%, what a pleasant surprise! And the strength in his somewhat atrophied right leg was stronger than his left in all three muscles. Another pleasant surprise. He was a real trouper, what a fatiguing day for him. He is in the group that will have a daily shot of 0.2 ml., the lowest amount, but the group that will probably see the least amount of side effects. We both learned how to administer the shot, I had the honor of giving him his first one! We are hopeful, at least it is SOMETHING! Will keep everyone posted!

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