Onfi for Lennox-Gastaut Syndrome User Reviews

Rating: 4.9

Onfi has an average rating of 4.9 out of 10 from a total of 9 reviews for the treatment of lennox-gastaut syndrome. 33% of reviewers reported a positive experience, while 44% reported a negative experience.

10		22%
9		0%
8		11%
7		0%
6		0%
5		22%
4		0%
3		11%
2		0%
1		33%

nyc...
Taken for 1 to 6 months
March 27, 2018

"A caregiver review. Started our adult daughter on Onfi for LGS (Lennox-Gastaut syndrome). In my opinion, there is an interaction between Onfi and psych medication. It appears that the interaction amplifies many of the Onfi side effects (physical and behavioral). Since Onfi was the only new variable in her medication regimen, what we observed was more than mere coincidence. Please carefully read the FDA-listed side effects of the medication. Onfi is the neurology team’s new and favorite drug. They can’t or won’t acknowledge that the listed side effects are the result of Onfi. Neurology will go out of their way to blame everything else under the sun."

5 / 10

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42 Report

Lyn...
July 21, 2016

"Justin became very shaky, weak, lost stability that he has not gained back. He went into massive seizures when on the drug. After two hospitalizations, we took him off. It has been over a year, and he continues to have difficulty with standing up in the mornings and walking all the time."

1 / 10

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48 Report

Anonymous
March 14, 2021

"I’ve been taking Onfi and had about five seizures a year now. The side effects are I can’t walk well, sometimes get mad very fast, and I can’t even stand to be around people anymore. I want to get off this drug. I’m starting to take magnesium, zinc, D3, B complex, omegas, I have not had a seizure since June, and I’m sorry that the doctors are trying to keep me on this drug."

5 / 10

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20 Report

Frequently asked questions

Cal...
February 9, 2014

"This has been the best medicine for Lennox-Gastaut Syndrome in our son's 11 years. It was tough going for about 6 months of severe highs and lows of crying to laughing hysterically. But getting through that has been amazing. He's more vocal, his pupils are not staying dilated, and he seems to understand more. I would tell any parent looking for help to please give this medicine a try."

10 / 10

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48 Report

Har...
November 20, 2017

"It has an opioid effect. I forget words I've known all my life. I am more fatigued. My doctor prescribed it for me 'because.' I haven't noticed any effect. Coming off the drug, my foot and upper leg get shaky. It is also a very expensive drug."

3 / 10

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21 Report

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STe...
April 20, 2016

"The worst of 32 tried over the past 41 years."

1 / 10

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25 Report

Mim...
January 18, 2014

"Worked really well for several months, then breakthroughs. Adding Banzel now."

8 / 10

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21 Report

Jos...
Taken for 1 to 6 months
March 18, 2021

"It works really well and causes fewer seizures and makes me happier and relieves stress."

10 / 10

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4 Report

Jam...
Taken for 6 months to 1 year
August 5, 2022

"I've been on Onfi for 6 months and no change. I'm having more warnings and massive seizures, so it is not a good drug for epilepsy. The side effects are sedation and fatigue. I'm on 5 mg."

1 / 10

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2 Report

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Reviews may be edited to correct grammar/spelling or remove inappropriate content. Reviews appearing to come from parties with a vested interest are not published. This information is not intended to endorse any medication and should not replace the expertise and judgment of healthcare professionals.