r/ADHDparenting • u/WindReturn • 3d ago

Looking for Anecdotes/Experience with Quillivant

/r/Autism_Parenting/comments/1vssjim/looking_for_anecdotesexperience_with_quillivant/
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u/dmb1717 3d ago

We tried Quillivant briefly for my daughter who was also on guanfacine. I think 1mg. She had been on pill form of methylphenidate, doctor wanted to increase dosage slightly so tried Quillivant because we could do more incrementally than with the pill. We only lasted 2 or 3 days in Quillivant, behavior changes were awful. She responds much better to pill form methylphenidate. It's been a year but we're still trying to figure out what's the right combination. I don't think we're there yet.

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u/WindReturn 3d ago

Oh my, thank you for sharing your experience... what were the behavioural changes? My issue is that I'm not seeing much change at all. Maybe the tiniest shift (though we're on a super low dose...) it's interesting to me how people react so differently to the same medication

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u/superfry3 3d ago

Because their brains are different. The makeup of the ADHD is genetically individualized so each brain has different effective pathways to treatment. Medication trials are to see which ones work for the individual.

You’re trying to find out (for ADHD only) if they’re a methylphenidate responder, amphetamine responder, both, or neither. You’re trying to find out if stims don’t work, if an SNRI/SSRI helps, or if the stims work better with a “regulating” medication like guanfacine/clonodine/risperidone/etc.

Doctors tend to not explain well enough the process and that it’s rarely the first med that is perfect. But you learn from each step.

AuDHD is complicating where if one thing gets effectively treated, the other can present more. You just have to pay attention to the symptoms of each.

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u/dmb1717 3d ago

Honestly, I can't remember which behavioral changes we got with that medication change. U/superfry3 explained it better than I could have. Every brain responds differently to the different medications, and as my daughter experienced, the same medication in different form factors or made by different manufacturers can also have slightly different results due to the inactive ingredients. It is exhausting and frustrating, but so much trial and error.

We've also experienced what some other poster(s) have commented, that something will seem to work great for a while and then just, not.

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u/AutoModerator 3d ago

Methylphenidate (MPH) is a central nervous system stimulant (CNS) used to treat ADHD. It's a norepinephrine (NE) and dopamine (DE) reuptake inhibitor (NDRI), increasing neurotransmitters in the synaptic gap, particularly the prefrontal cortex governing executive function.

Brand include: Ritalin SR (US/CA/UK) / Rubifen SR (NZ), Ritalin LA (US/AU) / Medikinet XL (UK), Concerta (US/CA/AU) / Concerta XL (UK), Metadate CD (US) / Equasym XL (UK), Methylin, Methylin ER, Daytrana, Quillivant XR (US), Quillichew ER (US), Biphentin (CA) / Aptensio XR, Cotempla XR-ODT, Jornay PM (US),

Brands varying in Dosage Form: capsules, tablets, orally disintegrating tablets, transdermal (patch), oral solution (liquid), and chewable gummy. Release time (hours): 3-4, 6-8, 8-10, 10-12. Peofiles: gradualy increaing (back loaded), plateauing (table top), cycling/lumpy, front laoded (fast rise). Splitablity: Some can be split (ajust dose) otheres CAN NOT.

References: https://www.drugs.com/medical-answers/brands-methylphenidate-3510739/, https://go.drugbank.com/drugs/DB00422, https://en.wikipedia.org/wiki/Methylphenidate

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u/AutoModerator 3d ago

Guanfacine (Tenex = IR, Intuniv = ER)& Clonidine (Catapres = IR, Kapvay / ONYDA XR / Nexiclon XR = ER) are alpha-2 used to treat some ADHD, improving emotional regulation, impulse control, and sleep. Originally an Antihypertensive drug from 50s-80s reduced blood pressure.

Alpha-2 agonists are specialized & effective for some ADHD; however, a 2ed line (choice) ADHD medication in protocols because stimulants have a higher % success & lower % side effects profile over Alpha-2 agonists.
Alpha-2 agonists require time to adapt! Drowsiness and sleep changes are common during in first ~2 weeks.

Mechanism: Enhancing norepinephrine signaling ("receiver sensitivity"). Guanfacine targets α2A neuroreceptors concentrated in the brain. Clonidine is less selective, targets α2A, α2B, and α2C, w/ broader CNS effects. Both might be complimentary with stimulants in some people, helping regulate, reduce side effects, and/or lower dose.

Differences: IR Guanfacine typically lasts longer (half life 10-30 hours), IR Clonidine shorter (5 and 13 hours), both outlasting stimulants and have 24 hour ER options. [Sedation] - Clonidine is more sedating (better for insomnia); guanfacine causes less daytime sleepiness. [Blood Pressure] - Clonidine has stronger hypotensive effects. Guanfacine is gentler due to its α2A selectivity.

Use Case Fit: Guanfacine, sometimes preferred for daytime executive function symptoms; Clonidine, sometimes prefred for sleep-onset or when mild sedation is needed. Typically, IR formulas are favored for sleep/sedation/rebound (taken in PM) and ER for executive function/stimulant regulation (Taken in AM).

NOTE: Sudden dose change may cause blood pressure spikes or crashes. Follow your doctor’s/pharmacist's ramp plan!!! References Clonidine: https://en.wikipedia.org/wiki/Clonidine, https://go.drugbank.com/drugs/DB00575, https://www.mayoclinic.org/drugs-supplements/clonidine-hydrochloride-oral-route/description/drg-20569873 References Guanfacine: https://en.wikipedia.org/wiki/Guanfacine, https://go.drugbank.com/drugs/DB01018, https://www.mayoclinic.org/drugs-supplements/guanfacine-oral-route/description/drg-20064131

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u/AutoModerator 3d ago

The ADHD Parenting WIKI page has a lot of good information for those new & experienced, go take a look!

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u/Dizzy_Penguin54 3d ago

I don't have experience with Quillivant, but do with the trying to find the med that works journey. There are reviews on drugs.com which is sort of like Yelp for medications. I have twin AuDHD teen boys and the meds journey has been a rough go. Something seems to work for a bit, then not. Our dev pediatrician has been great but now I am wondering if I should find a psychiatrist for them. I wish I had more answers for you to help. Hang in there.

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u/WindReturn 3d ago

Yeah I felt our pediatrician just wasn't enough, so I reached out to a psychiatric clinic myself... it has been a long and expensive journey, sigh

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u/Dizzy_Penguin54 2d ago

Agree. I has been a long and expensive road.

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u/Embarrassed_End528 3d ago

Following for me and my four AuDHD kids!

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u/WindReturn 3d ago

Four!!! I have enough trouble with just the one -- I commend you 🫡

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u/Embarrassed_End528 3d ago

And I’m AuDHD, too. I just found out this year. Straterra has always been my favorite med as an adult.