Titrate Down Guanfacine

[STARTwHello]

Can anyone share their experience with titrating off of immediate release guanfacine pills?

We did a liquid compound for over a year because our son couldn’t take a pill. Slowly increased to 2mg in the AM and 1.5mg in the evening. It helped his flight and sensory needs a ton for school (calmed him from the need to run jump and crash all day).

We learned though that it does not help his mood and the higher doses actually increase his agitation. We learned this when he refused to take the liquid after being sick and then he could actually take a pill.

We actually see a change down in dose though can also have huge impacts and can make him kind of loopy (after a few days of a lower dose) so wondering if there is a good way to titrate down with not too much negative impact. Seems like slow is best. We tried 1.25 and 1.25 for a week and at first saw good things but then he started getting loopy. Should we just go down to 1.25 for one of the doses (either AM or PM) at first? How long do we wait? Two weeks?

For reference, he is also taking Abilify in the mornings now as well.

Thanks for any experiences you can share!

[El-Eektrified]

Thanks for you question, I’ll try to explain my experience (adult though) I’m diagnosed with ASD and ADHD and was on guanfacine ER, Abilify, Sertraline and because the manufacturer of Guanfacine (Intuniv) has difficulties in Europe with supply- my psychiatrist wanted me off this med, cause it caused lots of internal stress…

I was on 4mg for nearly 2 years, and had to go down 1mg every week. I’m in my last week now… what I experienced was a spike in my blood pressure, it already happened going from 4mg>3mg so it basically stayed that way…

I also experienced difficulty sleeping, waking up in the middle of the night, feeling restless, headaches, feeling down… I simply have to push through, but it’s an awful period to be honest… so I understand how difficult it is to get off this med…

Everyone is different, but I imagine that it must be difficult for you son.

The abilify (I’m on 5mg) is great in terms of keeping my mood slightly stable and being able to function through all these withdrawal symptoms, so that’s a plus.

The only advice that I can come up with, stick with the plan… Withdrawal is obviously part of it, and I doubt if going slow, is going to make things easier…

[STARTwHello in reply to El-Eektrified]

Wow! This is so helpful! Thank you so much!!

I feel like his doctor doesn’t fully understand how difficult the withdrawal is. It seems like the longer you’ve been on it the harder it is and the more time there are withdrawal symptoms.

Curious if you don’t mind, is there something else your doctor is recommending you switch to because supply is an issue? Our son can’t do stimulants (major increase in anxiety and agitation) but he does need something to help with hyperactivity/sensory during the day.

Thank you again, it’s very reassuring to hear a first hand experience.

[El-Eektrified in reply to STARTwHello]

No problem, always willing to help! My new psych wasn’t that positive about Guanfacine, he told me about 4 children he put on this med, and that only 1 boy managed to stay on it. The other 3 couldn’t handle the side effects. But he also wondered what the positive effects were, because I wasn’t able to explain what it did for me, after those 2 years.

He diagnosed me with autism and added aripiprazole 5mg. And to be honest, I was hesitant to start an antipsychotic, but it really helped with agitation, restlessness, sensory issues and anxiety. So this was kind of a replacement to me. But your son is already on abilify, so doesn’t this help a little bit? Maybe he needs an increase? I’m on 5mg, started on 2,5 mg.

[STARTwHello in reply to El-Eektrified]

Thank you! Yeah I’ve heard mixed on guanfacine, either significant side effects or they’ve done ok. As he’s been on it though, it is not helping mood/agitation though, even making it worse at times so that seems counter productive to Abilify. It does help with hyperactivity and his flight response but if Abilify can do both, that’s ideal!

We’ve heard from others that just Abilify might be the way to go. He originally started at 2.5mg in the evening and that was not right. He’s at 7.5 in the morning now and that seems much better. We’ve lowered his morning guanfacine in that time from 2 down to 1.25 and want to go down again to 1. Just the afternoons/evenings we want to make sure he still is ok/sleepy. He’s still at 1.5 for guanfacine in the later afternoon/evening but over time we might need to look at that too.

Taking Abilify in the evening do you feel like there are times when it’s not as helpful? Like later in the day at the end of the dose do you feel like it still helps as much?

Thank you again!!!

[LONGNAILS219]

My son is on both but, the amblify is given at night and the Guaficine is in the morning for his adhd and he's at 3mg regular.

[STARTwHello]

Thanks! Most meds given at night we’ve figured out don’t help as much as they should during the day. He processes through them too quickly. He’s down to about 1.25 of Guanfacine in the mornings right now but we’re keeping the night at 1.5 for a while. We still saw agitation at around 10 yesterday morning which we think is the peak of the guanfacine. I think we will just have to keep trying to see what works. 👍