QELBREE: I have an 18 year old son who... - CHADD's ADHD Pare...

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QELBREE

willandgrace profile image
20 Replies

I have an 18 year old son who does fairly well on Dyanavel but is choosing to stop meds because it decreases his appetite (he's trying to gain weight since he's an athlete). Well, Dr. suggested we try Qelbree since it's not an amphetamine AND my son has some anxiety. I've just read about the side effects and I'm pretty nervous about my son trying it. Is there anyone out there who can tell me how it's worked for your child? My son is sensitive to amphetamines as he metabolizes quickly and too much or even a cup of coffee in addition to his meds can really make him jittery. Also, he needs to take lower doses and it wears off by lunch time. I was wondering if something like Qelbree might be better for him but the side effects are making me really skeptical. Would love to hear what your experience has been with this medicaion. thank you!

20 Replies
Gemstone1316 profile image
Gemstone1316

My son who is 9 started on Qelbree for a couple weeks. But we had to discontinue it because he wasn't able to take it without it being a huge struggle every day. It starts at one capsule of 200mg, then the next week goes 400mg (2 capsules), and then 600 mg (3 capsules). And these aren't small capsules either. You can break them open and sprinkle on food, but it doesn't desolve so you're left with tiny white beads all throughout the food which my son would not tolerate in the slightest. I feel like he didn't take it long enough to really feel any side effects. We didn't make it past week 2. Sorry this probably doesn't really help you, but that has been our experience with it.

willandgrace profile image
willandgrace in reply to Gemstone1316

this does help! ty so much for responding.

Pattimum profile image
Pattimum in reply to Gemstone1316

Have you tried to mix it in a small amount of apple sauce etc? So basically he’d end up with a spoonful of something not very nice but then a dollop of pure apple sauce on top and then let’s say his favourite drink or even soft drink to rinse off the bad taste in mouth?

Also I know that specialist speech therapists can work with children to teach them to swallow tablets.

However I know his advice may well be completely useless. I am lucky because my ADHD child swallows any tablet and any size with no problems. Whereas my 7 year old just is not able to swallow any tablet and also gags on any medication that is sprinkled etc so it’s lucky he doesn’t have to take any meds. And if he needs antibiotics etc he has to have it on a liquid form.

MM814 profile image
MM814

hi There, my son is 19 and started taking Quelbree last year. He only had luck in the past with Straterra (also a non stimulant). He sounds very much like your son. We tried every stimulant and they did not work for him. He is also sensitive to caffeine. He went off meds ahead of his freshman year of college (last year) but he decided at Thanksgiving he needed to go back on something. Doctor suggested Quelbree as it is like Strattera but gets into your system much faster. He thinks it helps him (though he still procrastinates which I don’t think anything can help) and he has had no side effects. Hope this helps!

willandgrace profile image
willandgrace in reply to MM814

thank you! I'm curious - why did he stop Staterra? That's one I considered trying.

MM814 profile image
MM814

he started having trouble completing tasks and procrastinating and my doctor thought trying a stimulant would help. Needless to say, two years and countless trials later we were back to square one. We put him back in straterra hos senior year and it didn’t help. He is more mature now and is interested in finding the right medication (and he was the one who thought he really did need it after being on it). He says it does help him without the side affects of the stimulants and more so than the straterra. I would definitely give straterra a try if he hasn’t been on it before. It helped him. I have a set of twins who also have adhd (and one with asd as well) and straterra never helped but stimulants do. Everyone is truly different!

willandgrace profile image
willandgrace in reply to MM814

ty so much. And you make a good point - that your son made the decision to take meds. My 18 year old wants to go without because he's trying to gain weight. Does the Qelbree suppress his appetite? I read that it can do that.

MM814 profile image
MM814

i think it is different for everyone. My son did not find that at all. But interestingly enough both of his brothers gained a bunch of weight on stimulants. Who knows! I think it is trial and error. Not hard to come off it if it doesn’t work. My son made the decision to go off meds because he was going to a military academy and they wouldn’t allow it if he wanted to go military afterward. He realized a semester in he needed it. Sometimes you got to let them see what it is like without it

willandgrace profile image
willandgrace

good to know. ty. After reading some negative reviews it's made me nervous but will give it a try. thank you so much!

Pattimum profile image
Pattimum

Qelbree is the newest non stimulant for ADHD. Read about non stimulants in general (let’s say on attitudemag online). Non stimulants work completely different to stimulants. In my opinion the non stimulants (once you find one that works for your son) are a better long term option because they are often all in one- prevent anxiety, can improve mood. Non stimulants take a bit of time to kick in, as they work on neurotransmitters in brain (a bit similar to antidepressants). Non stimulants don’t have rapid daily excretion from body like stimulants have. They kind of work more smoothly- 24/7.

The side effects lists are scary to read. I felt the same when we were switching my son to non stimulant Atomoxetine. In fact I was so anxious that now 6 months plus into non stimulant treatment I asked my son’s doctor for bloods- kidney and liver function, full blood count, just to get that pease of mind that his organs are not affected. I know there is no reason to be worried because the serious side effects are very rare but still, I want to be sure.

I’d say give it a go with Qelbree, your son is old enough to be able to tell you how he feels. He can self monitor. And don’t despair if this one won’t be right for him, he’s got a few more non stimulants to try. Stimulants are the worst in terms of appetite suppression so he is right to try to switch to non stimulants.

willandgrace profile image
willandgrace in reply to Pattimum

thank you so much!

ELucas13 profile image
ELucas13

We had a terrible experience on Qelbree, but that does not mean that your child would. All the kids are different! Because it is relatively new, there isn't as much information on it as, let's say, ritalin. Still, it has been used for other purposes before and been on the market, I believe, as an anti-depressant. Have you tried other nonstimulants? I think Qelbree is more a "last resort" at least our prescriber brought it out as that. Our insurance wanted us to try Straterra before paying for Qelbree.

willandgrace profile image
willandgrace in reply to ELucas13

ty so much for your honest response. I had considered Straterra in the past but didn't pursue. Our doctor just suggested Qelbree very recently because I expressed how much my son dislikes the stimulants. We've got samples but I've yet to have my son try it. I'm nervous about it, AND it supposedly takes a week at least to see results. How soon did your child begin to feel side effects? And how old is your child? My son tends to feel anxious sometimes so that's another reason Qelbree may help.

ELucas13 profile image
ELucas13 in reply to willandgrace

We felt side effects quickly and we were under an assumption they would go away after a few weeks on the medication. I don't think we made it past three weeks of Qelbree before we were absolutely done and couldn't give it any more of a trial. Even the positive of the medication outweighed the negative we were experiencing. That doesn't mean it wouldn't eventually have been fine, but for us, our son was an emotional wreck--so sad and anxious. We had to titrate off of it so it prolonged that experience.

My son is an anxious kid and we have some severe depression that runs through the family so I was very weary of Qelbree because of the black box warning but believe that the warning is there more as a protection for the pharmaceutical company than something I need to worry about, but nevertheless, his mood was very sad on Qelbree and I didn't like what I saw.

We ended up on Guanfacine ER (nonstimulant) plus Vyvanse. Vyvanse has been the only stimulant my son could tolerate. He is 9 years old and his appetite returned after being on the stimulant for a month or so.

willandgrace profile image
willandgrace in reply to ELucas13

ty! I think I would have bagged it pretty fast so I congratulate you for staying with it for as long as you did. Vyvanse has worked well for my son in the past! He tends to stay on a medication for about 2 years before it doesn't seem to work as well anymore. My daughter was on Vyvanse and Guanfacine for quite a while and did very well with it. My son went from Vyvanse to Dyanavel (both pretty smooth and effective meds). He just prefers to not take stimulants so that's why we're going to try Qelbree. Thank you for your comments and good luck!

Pattimum profile image
Pattimum in reply to ELucas13

My son psychiatrist explained that there is a ‘good practice’ regiment for doctors (but they don’t have to stick with it) where newest medications are tried last on basis that ‘the other meds have been longer on the market and are better evidenced and researched and more is known about their effects and side effects and long term effect on body in medical journals etc.

However it’s not a rocket science to quickly notice- let’s say in the UK children receive medication for free on national health system, and the NICE ‘independent research’ setting ‘best practice guidance’ nearly always recommends the cheapest meds as a ‘first line of treatment’. So basically there is a bias of ‘greatest good for greatest number of people’.

I’d prefer to pay from my own pocket for meds and have what is truly best option for my child as an individual.

Saying that- Quelbree is the newest and is very expensive, and I wonder if that’s why it takes so long in the UK to licence it for use here. It’s not licensed yet. Yes, they do say they like to see more research and long term effects, but exactly as you say- this medication have been used before, but just for something else. So they know exactly side effects and it’s all evidenced in medical journals but not under Qelbree name.

Also that’s probably why insurer wants people to first try the cheaper options. I know I am cynical, but is it always about what is truly best for this individual or does it really also come down to money…

lucasmom421 profile image
lucasmom421

I'm interested about this as well.. my 15 year old son does not do well on stimulants and we have tried most of the other meds including Staterra which did nothing for him. He is currently taking Wellbutrin and just started Prozac for anxiety. I think they help a little with focus but not very significant. Our MD has also mentioned Qelbree. Would love to hear about how other teens do in this? Getting worried about how he will function in college on his own? I'm still micro-managing his school work.

willandgrace profile image
willandgrace in reply to lucasmom421

same! I am micromanaging even though I know I shouldn’t and I worry about college. This is why I’m anxious to find a medication he’s ok with. He hates the stimulants although he was least opposed to instant-action rather than extended release. But his dr is really reluctant to prescribe because he says they’re addictive. BUT MY KIDS HATES STIMULANTS SO WHY ARE WE WORRIED ABOUT ADDICTION?

lucasmom421 profile image
lucasmom421

Willandgrace - Kids with ADHD typically do not get addicted to stimulants. It is the kids without ADHD who love the effects and get addicted. It works very differently for those without the diagnosis. None of our MD's have ever mentioned addiction issues with stimulants and we have been prescribed immediate and extended release many times over the last five years.

Nice to hear from a fellow micromanager!

willandgrace profile image
willandgrace in reply to lucasmom421

that’s good to know and it makes sense because I know plenty of kids who get prescriptions for immediate release.

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