Qelbree Side Effects

[ELucas13]

We recently started Qelbree for my 8 year old. Does anyone have any feedback on side effects and when they go away? How helpful has it been? It's still so new! We noticed when he first started it and when we upped the dosage he was dizzy, tired but couldn't sleep, not hungry, moody, and nauseous. But then by the third or fourth day, mostly fine. We have tried every ADHD medication out there which is how we ended up on Qelbree. We have had success with Guanfacine 2mg but he needs a little bit more assistance. Strattera, which is a similar medication, made him incredibly ill so we had to take him off that after two weeks.

[Jennrenn23]

I’m not clear on the question exactly because it seems like you said the side effects seemed to go away, but I will answer with our experience. Buckle up. It’s a ride.

Background: I (mom, 46 years) have three gifted children with ADHD and I have it as well. My 27 year old son and my 10 year old son both seem to have the same flavor of ADHD and require stimulants, particularly amphetamine salts, in order to pursue academic goals. A new methylphenidate, Azstarys at highest dose, works well for my 10-year-old on weekends and summer, but it’s not enough for school work. They suffer with much more severe symptoms of ADHD than me and my daughter. They struggle with anger due to the various medications and appetite suppression and weight loss.

My daughter has not tried stimulants and her flavor of ADHD is very similar to mine. We are very detail oriented and anxious and try to control things because we have massive issues with short-term memory.

She started on Qelbree (100 mg per day loading for 7 days, then increase to 100 mg twice per day) about a year ago after trialing guanfacine (Intuniv but not XR) and escitalipram (Lexapro). She had some symptom relief with both of those, but they both had such bad side effects that never went away. Guanfacine caused issues with blood pressure during competitive soccer training and constipation, escitalopram caused rapid weight gain and excessive day and night sweating. She is very physically active, so neither of those options would work at all.

We needed something that would control her anxious need to control; it was causing social issues, also she was starting middle school and though her academics were perfect, I could see that she was struggling to remember things and to focus on things and covered that up with immaturity. She also did a lot of age inappropriate crying at all times.

Our nurse practitioner recommended the Qelbree and we started it with immediate results. Her med side effects included nausea and indifference to eating. She rapidly lost the extra weight and stopped the night and day sweats and blood pressure problems. The crying stopped, her mood leveled and she became focused and behaved age appropriately. It was really amazing to see.

However she struggled mightily with nausea and it was very frustrating because she really just felt like she could not eat and did not physically want to eat, even when she mentally wanted to eat.

Both of my younger kids suffer with sensory issues and swallowing pills is a huge problem. We finally figured out a couple of years ago that they could swallow pills with thick bites of Greek yogurt and that’s what we have stuck to. The 200 mg Qelbree capsules are enormous for some ridiculous reason, and our solution to that had been giving her two of the 100 mg twice per day, once in the morning and once at night. We decided to switch both of them to evening administration and to only take them with food to try to stop the nausea.

I will note here that the nausea got so bad that we actually decided to taper off of the Qelbree to d/c it first and try something else, but her ADHD symptoms came back so quickly and she enjoys the symptom control so much that we decided to stick with Qelbree and try to figure out a way around the nausea.

The 200 mg (2x 100mg) capsules at night, with food, worked well at controlling nausea for quite some time, but then her ADHD symptoms started to ease back and so we assumed she needed an increased dose to the 400 mg Qelbree, which would require jumping up to two of the huge 200 mg capsules at night. We started that, and her nausea did come back; it stayed even after a couple of weeks, so I decided a different approach.

Cyproheptadine (a first line antihistamine) will block some of the serotonin receptors that are activated by Qelbree that cause nausea. It is actively used today as an appetite stimulant, and my 10-year-old has used it successfully when needed for that purpose. It comes in an easily divided 4mg tablet, but can obviously cause hunger, weight gain, and fatigue and is generally given at night.

I decided to give her 2 mg cyproheptadine at night with her 400 mg Qelbree to see what would happen. She had immediate resolution of her nausea but also had an immediate increase in appetite, mostly for extremely sweet foods, which is very unlike her. I mean very intense cravings. We also saw an increase in her ADHD symptoms so it’s not beyond me to think that the cyproheptadine could be blocking some of the positive effects of her Qelbree too.

What we landed on is giving her 2 mg of cyproheptadine three times a week at night. Sometimes I decide to back off even more, and my goal is to wean her off of that totally, but if the nausea comes back, I can easily administer the cyproheptadine, you can even give it whenever the nausea starts during the day, if needed.

So that is where we are, we have been very successful with Qelbree and seem to finally be able to manage the nausea that comes with dose increases. We don’t see any other side effects except maybe sleep interruption for up to a week when increasing the dose.

The rest of the story is that I was so impressed with how well she did with Qelbree, I decided to start it myself about 4 months ago. It just achieved adult indication in the last month, but I had actually been taking samples for quite some time before. I am on 2×200 mg (400mg) each night and I’m looking to bump up to 600 mg slowly. I have also struggled with nausea as a side effect, so I am slowly titrating. Vyvanse was a great drug for me mentally, but it completely took away my sleep hygiene and every single SSRI I took caused weight gain and massive night sweats. Very similar to my daughter.

I will say that the first week that I took Qelbree, I had one or two days where I felt very mentally off, almost disassociated, but I powered through it and that went away quickly. I don’t really mind the appetite suppressing quality of the drug either (for me), But if it becomes a negative I can also add cyproheptadine.

Last note, my 27-year-old severe ADHD son (independent, single -lives in another city, software developer) just started Qelbree after almost 20 years of mostly Adderall tx. He had recently (past year) added Prozac and was very much wanting to get off of the Adderall because it was causing him tremendous anxiety and his hands shake and he stays angry. The Prozac was causing weight gain and night sweats, sound familiar? It was also causing him to cry a lot and he was very unsuccessful with it. I also, from personal experience, believe Prozac causes us (my fam) to crave alcohol, so I wanted him to remove it for that additional reason.

He has been titrating on to Qelbree (100mg x 7 days, then 200mg per day then up to 400 or 600 mg for adults) for the last two weeks and just in the past couple of days has he started to feel very good and happy and focused at work and he has not been taking any Adderall whatsoever, fingers crossed! He is obviously also feeling the effects of instant Prozac d/c from his system but his night sweats and crying have stopped. No Adderall rages.

In my family, medication success is seemingly tied to whether you are male/female biologically, in that the estrogen and testosterone mix really plays with your symptoms/presentation and response to medication, whether that is side effects or positive responses. Therefore I was worried that the Qelbree might not be a successful choice for my older son, and I guess it still might fail, but right now it’s very positive.

I guess my remaining question would be whether or not you can safely take a stimulant with Qelbree, because my older son may need to add a methylphenidate (Since he is trying to get away from the negative effects of years-long amphetamine treatment) if the Qelbree isn’t giving him enough focus during the day for his programming job.

Reasons I like Qelbree, other than symptom control: Extended release, once a day dosing. Does not seem to have any cardiovascular effects. No sweating. Not a stimulant so not a controlled substance. Coupon in effect. No anger issues.

Things that you may have to manage while taking Qelbree: nausea and extreme appetite suppression. In this case cyproheptadine can help both. For people for whom Qelbree does not control the lack of focus aspect of ADHD well, I’m not sure if you can add another medication along with this, I have not looked into it as I have not needed it. I suspect this will be a protocol, but the drug (at least the indication for ADHD and XR form) is new.

ETA: because this always comes up, yes we have tried MANY non-pharmacological treatments/therapies/techniques with all of my children and still continue them to this day, but we cannot manage without medication.

Works to a degree: Extreme schedule management, staying on schedule, not staying up too late, managing screen time, micromanaging what he does on screen time, eating protein several times a day, managing any dyes in foods, managing amount of sweets, reducing dairy and gluten as much as possible, melatonin at night, parent instruction/education.

Things we do, but I have no idea if they work: Accentrate plus MZI daily for years (magnesium, zinc, iron and DHEA/EPA supplements), Culturelle daily probiotic for years, CBT, OT

[ELucas13 in reply to Jennrenn23]

Thank you so much for sharing! Even though everyone reacts so differently to medication, it's incredibly helpful to hear about these experiences. I'm very grateful you shared your personal journey and your family's experiences as well. I feel a bit lost because the drug is so new.

I have found, in the brief two weeks he's been on it, that the side effects are intense as his body acclimated to the medication-- no appetite, tired, irritable, dizzy. Then after about four days he rallied to his normal self until we upped his dosage. Then it was all over again for another four days.

His teacher said he has been more focused but more emotional in which he even has had to leave the classroom. Stimulants made him insane, but still not ideal. He is also still taking Guanfacine 2 mg and I'm a little concerned the drug is exacerbating some dizziness and I don't know if it's beneficial to have him on both or not or if it's hurtful. We will meet with our prescriber to discuss.

I noticed the studies only extended to 8 weeks, so I'm also just nervous about how it will work long term. But it's promising to hear stories of it working or even just to know we are not alone in our journey!

[randomscreenname in reply to Jennrenn23]

This is a fantastic and detailed account of your family’s experience with Qelbree, and I’m grateful for it. I’m still awaiting insurance approval so I can start taking it (I’m 51, and stimulants make me more irritable and don’t otherwise really help with core ADHD symptoms, though I’m happy for the reduced weight while on them). Your story has given me some hope, as I have had no improvement in my condition over 2+ years of treatment (and decades of ADHD living without any treatment).

[ELucas13]

Just an update on this. We pulled our son off Qelbree. The side effects didn't get better even when we thought they were improving and he was an emotional wreck. I think it's a good medication for some, but for us it did not work.

[BVBV]

Have you tried chlonidine?

[ELucas13 in reply to BVBV]

We are on guanfacine and have had such a positive experience with this one that we don't feel the need to try clonidine. We have since tried Vyvanse in conjunction with the guanfacine and so far this has been pretty effective.