Guanfacine / Intunitiv side effects

[NinaManiana]

Hello everyone. My son is 6 and takes Guanfacine for ADHD (he has comorbid ASD and ADHD). We tried all the different stimulants over the last year and all made him angry and violent and completely stopped him eating so we switched to non stimulant.

We’ve been oscillating between 1mg and 2mg. On 1mg he is still totally hyper, but meltdowns have hugely reduced and he’s generally happier and more socially engaged. But the hyper behaviour is a big problem for school so we moved to 2mg which generally makes him moody and a grouch.

There also seems to be a side effect of very vivid terrifying dreams. He’s often awake from 2am - 6am as he’ll be too scared to go back to sleep.

Very interested if anyone else has had experience with this medication whether the side effects are usual or not. We’re in regular contact with the psychiatrist, but as most kids are fine with the stimulants, i get the feeling that her group of patients who have moved to non stimulants is limited.

On US forums there seem to be some families who combine a stimulant and non stimulant (i am not a doctor so no idea why), but our psych said that’s not allowed in the UK.

Stim meds increases Bp and intuniv decreases Bp - that’s why cahms won’t prescribe both. However lots of private people will prescribe both just to gain focus at school (stim med)

My 8 yr old (medium build) is only on 1mg - last yr he had bad dreams on it for months but I think he’s put a bit of weight on now so doesn’t have the nightmares…. He can’t tolerate 2mg as he falls asleep

There is strattera (sp) which is another non stim but it made my son skin so itchy and he was so emotional on that one so we stopped it

Overall intuniv works best as it doesn’t increase anxiety.

Have you tried taking it in the am ? (My son takes his at 6pm) some people I’ve heard it works better ….

Good luck

Thanks so much for responding. We do have a private psych from before the nhs took over his care (18 month wait for CAMHS so went private in the mean time). I’ll dig out his number and chat to him about whether we can do something privately as my son’s focus is as dreadful as without any meds at all.

Will give morning meds a go. At first they made him so sleepy we couldn’t but as he’s now piled on weight (in a good way, he was horrifyingly underweight before) he may be able to tolerate it

Hi OP, it is definitely possible to combine stimulants with non-stimulants in the UK. I think many psychiatrists are not experienced with combining meds so are reluctant to do it. My DS takes both Medikinet and Intuniv and it is a balance that works well. Intuniv on its own made him impossibly sleepy but the stimulant counteracts that. I think there is a lot of trial and error involved with meds and side effects, my DS often had unexpected side effects - I know how frustrating and exhausting it is, especially when it’s sleep related. Hope you find something that works x

Hi sorry to hijack the thread but my son had his first dose of Intuniv yesterday and there are so many questions I would love to ask someone that has also been through this..! He has started on 1mg and will take this for 7 days and then moves onto 2mg for 3 weeks before we have a review with his clinician. She did say that at that point if we need it we can look at using a stimulant along side. He has tried Medikinet and another version of Methylphenidate but these both seemed to stop working after a couple of weeks and his emotions/meltdowns were all over the place. @NinaManiana how long after your son started taking the Intuniv did you notice a difference.. was it instant or did it take a few days? My son had a major meltdown this morning not wanting to go to school and I’m wondering if it was just coincidence with him taking the first tablet last night or if it’s his body’s reaction to the medication. He also woke last night night with stomach pains so hoping this will ease off eventually. It feels so lonely at times going through this I have been searching mumsnet daily for experience of the different adhd meds..

Hello @yourmyforever!

It took a few weeks to get my son stable on guanfacine. We’ve basically ruled out going onto the 2mg and will stay on 1mg as the side effects on 2 are too great.

Funnily enough my son also had big issues with not wanting to go to school at first! I can’t work out what it was but he just wanted to be home.

The first week he was really sleepy a lot of the time, but once he got used to it, i would say the 1mg has been transformative. He’s less impulsive and his terrifying meltdowns have hugely reduced. He’s also much more social. I hope you have similar effects, it’s been so good to see.

@Sunlightonthewater, we spoke to the psychiatrist yesterday who has done some research and agrees that yes, a combined regime including a stimulant is something we could try, which is great as his focus on guanfacine is still really bad. He’s a bright kid but he’s at the end of year 1 and academically still at nursery level pretty much as he just doesn’t engage at all.

Hi there, I know this thread is a good few months old but I’m hoping someone might see my post and advise!

DS (14) is just about to start Intuniv. He has been on Medikinet for around 18 months but it impacts on his appetite too much. We are no longer seeing enough positive affects for his concentration and increasing his dose is not an option because of his low weight. So we are starting 1mg Intuniv for 3 weeks, then moving to 2mg after 3 weeks with a view to start combining with a stimulant med to help with his concentration. My question is when is the best time of day to give the Intuniv? I know that extreme lethargy is a common side effect so wondering if it is better to give in the evening?

Hi @Rollergirl11
we give Intuniv at 6pm and have done since my son started it back in March. It has completely changed our lives for the better but do be prepared for the tiredness side effect, we found it lasted a few days each time we upped his dose but then completely stopped. He was falling asleep at lunchtime and so drowsy I wondered if we had made a mistake giving it to him but after 3-5 days the tiredness vanished and we were left with a changed boy. Good luck! X

@yourmyforever thanks for that. Does your son take stimulant medication alongside or just the Intuniv?

We tried a dose of Elvanse along side the Intuniv but we’ve realised my son can’t tolerate stimulants as it increases his anger and aggression so we have gone back to just Intuniv. I know it works for alot of children though so it’s completely down to the individual!