Old 03-12-2018, 11:15 AM #1 (permalink)
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Post Acthar Gel Trial

My PALS is currently three months in to the Acthar Gel clinical trial. I know there was some people asking about it earlier, I wanted to post in case anyone had questions. I don't feel like it is reversing anything, but it has really helped her stamina and appetite.
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Old 03-12-2018, 11:45 AM #2 (permalink)
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Default Re: Acthar Gel Trial

I didn't even know there was a trial for ALS patients. I just knew it was used for Lupus and Progressive MS. Guess I missed that one.
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Old 03-12-2018, 01:17 PM #3 (permalink)
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Default Re: Acthar Gel Trial

Acthar gel is corticotropin, which works by getting the adrenal glands to to produce more cortisol. I canít see how this would help ALS, but it will be interesting to see the study results. In terms of an energy boost, you get that with Prednisone and all the corticosteroids. It feels good for a while, but itís generally not sustainable. Sorry to be such a skeptic.......
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Old 03-12-2018, 03:42 PM #4 (permalink)
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Default Re: Acthar Gel Trial

Karen that would explain why she is experiencing increase in stamina and appetite, but how that will help ALS progression I can't quite see.

Please do let us know how you go with it.
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Old 03-13-2018, 10:19 AM #5 (permalink)
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Default Re: Acthar Gel Trial

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Originally Posted by KarenNWendyn View Post
Acthar gel is corticotropin, which works by getting the adrenal glands to to produce more cortisol. I canít see how this would help ALS, but it will be interesting to see the study results. In terms of an energy boost, you get that with Prednisone and all the corticosteroids. It feels good for a while, but itís generally not sustainable. Sorry to be such a skeptic.......
No worries. I don't think it is a long term solution either. My hope is though that it might be part of a more comprehensive treatment in the future. Perhaps used in conjunction with other drugs.

We spent almost a year treating her like it was an autoimmune condition as her inflammation markers were all over the place. Once they settled on the ALS diagnosis our Neurologist thought she would be a good candidate for this trial because of the role inflammation plays in progression and her lab work leading up to it. I am just hoping it slows things down until something more viable comes along.
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Old 03-13-2018, 02:52 PM #6 (permalink)
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Default Re: Acthar Gel Trial

I think everything is worth trying as often cures and treatments come out of unlikely or even accidental trials, let alone just get stumbled upon.

We all know about bread mould after all.
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Old 03-13-2018, 07:42 PM #7 (permalink)
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In transgenic mice, SOD1 levels were reduced in addition to slowing the disease down -- not that mice models mean that much, nor that downstream necessarily means much upstream, but that was one of the rationales for continuing development.
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Old 03-13-2018, 07:53 PM #8 (permalink)
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Default Re: Acthar Gel Trial

Best wishes with the trial. Autoimmune diseases run in my family. Brother has Lupus and RA. Niece Type 1 diabetes. I have Hashimoto's.

Please keep us posted. I had a very intense, manic, reaction from oral steroids. It did give me energy for a long time and I only took one. I took it when the herniated c5/c6 got aggravated. I did better with the injections but couldn't tolerate the oral. My brother does quite well on the oral, when needed.
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