My daughter has just been prescribed this drug for infantile spasms. Needless to say my wife and I were FLOORED when we found out the cost on this is 23 THOUSAND DOLLARS a vial and she will need roughly 4-6 vials. That is NOT a typo. TWENTY THREE GRAND.
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3 People found this comment helpful
Not yet a user but okay with what i have heard with users.
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bobby08 | 65-74 | Male | On medication for 1 to less than 2 years | Patient
12/26/2013
Condition: Nephrotic Syndrome
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction
I lived. I had been given six months to live before this treatment. But it was used on me over 60 years ago. One major side effect was and is benign essential tremor. I can barely write my name or feed myself.
1
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Anonymous | 25-34 | Female | On medication for 1 to 6 months | Caregiver
8/9/2013
Condition: Other
Overall rating 3.0
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My child was on ACTH for Infantile Spasms. Decreased the seizures, but not a cure all. He became very swollen from this medication. After 10 vials in 3 months he still was not SF. Again, at the cost of at least $23k a vial, and not a cure-all, it makes it hard to have a good satisfaction rating.
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Ronni61 | 45-54 | Female | On medication for 6 months to less than 1 year | Patient
5/12/2013
Condition: Multiple Sclerosis
Overall rating 3.0
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I took ACDTH in a trial study in 2005 it worked fine. In 2013 it was given as a med for 3 weeks for MS relapse. It has been a month. I am still bloated, feet and ankle swelling. Have moon face and nausea some days. Not responding to water pills did not seem to help as well as trial study in 05. Not happy to have tried it again and will not try again. Affects were too negative for me. including weight gain hard to fit into shoes from swelling after one month off of the med. Very stressful.
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Anonymous | Female | On medication for less than 1 month | Caregiver
9/22/2011
Condition: Multiple Sclerosis
Overall rating 3.0
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Okay, the drug is easier to tolerate than methylprednisolone, the triadional treatment for MS exacerbations. It has a slower absorption rate, so it stays in the bloodstream longer, and the side effects seem to be kinder than either po or IV steroids. But, and this is a *Huge but, the barbarians who make the stuff have priced it so far out of human reach that they've rendered it literally unusable. (This is the end of my rant.)
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dr_samer_elnagar | 35-44 | Male | On medication for 6 months to less than 1 year |
9/16/2011
Condition: Other
Overall rating 4.3
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firest use in infantil spasm vgood but after 16 ampul inj the effacacy decreased
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kelechi09 | 25-34 | Male | Patient
1/23/2010
Condition: Other
Overall rating 3.0
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Not yet a user but okay with what i have heard with users.
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rei | 65-74 | Female | On medication for less than 1 month | Patient
11/7/2008
Condition: Inflammation of the Heart with Rheumatic Fever
Overall rating 3.7
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Ease of Use
Satisfaction
Had rheumatic fever with severe swelling of ankles and wrists, severe pain. Was in hospital for 2 months until heart specialist started ACTH 3x day 30 days. Followed by bed rest for 3 mo. I was age 9 at the time, and am now a healthy 67 yr old. The other kids that had it at the same time I did have either died or have been having heart problems since their 30's.
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motor34 | 35-44 | Male | On medication for less than 1 month | Caregiver
10/1/2007
Condition: Other
Overall rating 3.7
Effectiveness
Ease of Use
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My daughter has just been prescribed this drug for infantile spasms. Needless to say my wife and I were FLOORED when we found out the cost on this is 23 THOUSAND DOLLARS a vial and she will need roughly 4-6 vials. That is NOT a typo. TWENTY THREE GRAND.
8
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[email protected] | 45-54 | Female | On medication for less than 1 month | Patient
9/18/2007
Condition: Multiple Sclerosis
Overall rating 4.0
Effectiveness
Ease of Use
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I didn't have the usual side effects that are common with steroid treatments. I didn't gain weight, nor have headaches or hives. It ,took care of my symptons, and slowed the progression of my MS.
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