Acthar drug dosage trial

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ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
I also wrote under the Acthar thread but wanted to share with everyone our modest excitement over Tom starting the Acthar drug dosage trial yesterday. It was an extremely long and fatiguing day of tests and questionnaires, but Tom was a trouper and I had the honor of administering his first shot! He is in the group to have one shot daily of 0.2 ml, the smallest dosage but the group that will probably see the least amount of side effects. Let's hope that this drug shows some promise of slowing progression! At least I feel like we're doing something!
 
Please keep us updated and God Bless!
 
My dad is in it and gets two shots a week. No noticeable side affects yet. I will see if I can find out what dosage he is getting. I will keep everyone informed as how things are going. Best of luck to Tom! I'm praying for him!
 
I sure hope it helps.

An ALS spouse/caregiver ( on a different forum) was very hopeful when her husband decided to go on Ritulek.( sp )

She now says she doubts it is helping at all.

We can only hope help is ...........just one study away.
 
Dad did take Ritulek (sp?) when he was first diagnosed. He saw no improvement so he quit taking it. Heard it can be extremely hard on the liver.
 
Tom also takes Rilutek (now the generic Rilizole). Because his ALS is very slow progressing, some of his doctors have commented that the drug may be helping. It does seem to help the bulbar folks more than limb folks, as we have been told. So we're hoping for some of the same results from Acthar. Can't hurt to try!
 
Please thank him for his courage
 
That's great news ECpara, please keep us informed of any effects...hopefully positive ones!
 
Just a quick update. My dad is having no side affects of the drug except a little trouble getting to sleep at night. Don't know if it's due to the drug or not.
 
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