Guanfacine XR

[STARTwHello]

Looking for feedback on Guanfacine XR adjustment/side affects. Our son has been on the immediate release compounded into a liquid for a year. We switched last Thursday to a once a day XR pill because he can now take a pill and it’s supposed to be more consistent throughout the day.

Friday was ok but the pill amount is just slightly less than the liquid dosing (.6) and he’s had a hard time adjusting. I think we are seeing some “withdrawal”. He was up until 11 on Saturday and then 10:30 last night. Last night he was dancing on the couch at 9p. 😬

Since Thursday his appetites been down too. He ate a little more this morning because I encouraged him but then on the way to school he mentioned he was dizzy and threw up at school.

I messaged his doctor but was curious if others saw this at first? It looks like it might subside as his body adjusts.

Thank you!!

[Knitting20projects]

Is he on the 1 mg guanfacine ER tablet? I thought that was the lowest dose tablet for extended release guanfacine (common starting dose) but it might depend on your child. It’s possible he’s having low blood pressure causing dizziness and nausea. You should talk with the prescribing doctor to see if they want him to get it checked.

[STARTwHello in reply to Knitting20projects]

Thank you! I do have a call to his doctor, have not heard back. He’s on the 3mg pill because that’s about what he’s been taking immediate release for about a year.

[soh777 in reply to STARTwHello]

I haven’t read other replies but in our case we’re giving the same daily dose but it was prescribed as 1 mg tabs 3X a day, also ER. He tried IR early on but that was a mess with timing. I’d wonder if 3X of 1 mg might be better but hey Im hardly in a position to guess…

[STARTwHello in reply to soh777]

Interesting!! Did they say why for the 3 times? The XR extended release is supposed to be taken once daily either morning or night. We’ve done night and it’s been horrible but the more I read it says to not do a mg to mg switch and titrate off the immediate release and then restart with XR. We did not do that, they had us start at a 3mg XR tablet.

[Mamamichl]

Guanfacine is a blood pressure med before it is an adhd med. my partner and my oldest have tried it but I refuse to let my youngest try because my partner had dizziness, and my eldest actually feinted because his blood pressure went too low.

[MOMicaO]

Hi! My son switched to guanfacine ER from immediate release (which he took for 1.5 years) over the summer. He had a very similar reaction in terms of it making his sleep disrupted! He takes his 1mg dose in the morning and he was having a lot of trouble falling asleep and complained of a stomach ache more often than usual but no dizziness or throwing up. It did take nearly three weeks to adjust. We gave him 2.5mg of liquid melatonin at night to help with the insomnia until he adjusted.

We did notice that the 1mg dose did not seem to help for very long with attention once he adjusted so we went to 2 mg about 5 weeks after beginning the 1mg ER which helped slightly. The 2mg had the opposite effect and made him very tired by the afternoon but he has since adjusted much better as well (been about 4 weeks). I would definitely take into consideration what he eats before or with the medication as I have seen that have some effect on side effects. Usually he does best if we give him something to eat first and then the medication but never anything high fat since they say it can make side effects worse. I was hoping we could switch to nighttime dosing to avoid the food limitations but the doctor wants to keep it in the morning so for now we are just seeing what works best so that it can be helpful for him while not also making him feel sick. I hope your son adjusts!

[STARTwHello in reply to MOMicaO]

Ok interesting! Ours wants us to do afternoon/evening so we take it around 4p. He’s been spinning, up much later, after he takes it. How much was he taking when he took the immediate release and how often when you switched.

[MOMicaO in reply to STARTwHello]

He was taking a half in the morning and a half in the afternoon of the immediate release 1mg pill before we switched. I figured the extended version would be better since it would stay in his system in a more balanced way but it seemed almost like a totally new medication the first few weeks. He would have meltdowns from not being able to sleep. He would get really upset and think it was fault since he hadn’t had that trouble before. We’ve always had to give him 1 ml of liquid melatonin and he sleeps great through the night (without it he takes 3 hours or more to fall asleep) but when we switched, it was like he’d had an energy drink. 2.5 ml was the only thing that helped and we had to lie down with him most nights to help him stay relaxed. Since he’s adjusted, I think the switch was the right choice because he doesnt have the peaks and valleys we noticed when trying to give him two doses ourselves. The adjustment has taken longer than I expected but I did read that this medication can take months to adjust to so I’ve just watched him carefully for anything concerning and hoped for the best. Perhaps the doctor will lower your sons dose slightly and see if that helps minimize those side effects. I hope some of this information is helpful.

[STARTwHello in reply to MOMicaO]

Thank you!! This is so helpful and reassuring. We are seeing the energy drink affect in the evening for sure! He’s usually asleep by 8/8:30 and he’s been up to 10/11 but not just up, like needing to run circles. From all the experiences I’m hearing I think it’s because he was getting such a faster quicker dose of the immediate release and now with the XR he’s not getting as much med as quickly. It’s reassuring to hear to give it time though, which is what I anticipated but good to hear someone else’s specific experience. And honestly, what you said is why we want to give it time and try! We are hoping long term this is more consistent for him without peaks and valleys. Thank you!!!

[HeartChaser]

Hi! I hope your doctor has given you some guidance by now, but I wanted to share my experience.

My son started with the 1mg ER taking it at night. He had a stomach ache the next morning and never again. His appetite is definitely less overall. For insomnia he gets 3mg of melatonin an hour before bed.

Good luck!

[Lanego]

My son is 11yo and can only tolerate 1mg intuniv due to low blood pressure. 3mg may be too much. If you have a BP cuff at home I would check his BP. We also give this medication after school, around 4 or 5 pm instead of in the morning. When he was on 2mg he complained of stomach aches. Good luck!!

[STARTwHello in reply to Lanego]

Thank you!! I think we’re going to give it some time. It’s technically the same med as he was taking but a totally different delivery method/release, so we want to see how he adjusts.

[AllieEgle]

Hello, we too have had similar side effects from changing doses and switching to extended release. Our son has even had manic like episodes when we changed doses. We are trying to give the medicine time to level out but it is concerning for sure.

[amewhit]

Hi there - I did a lot of research on this med as we did the same thing. Intuniv ER is about 1/2 as bioavailable as Tenex or Guanfacine IR. So, if you were doing 3mg IR, you would want approximately 6mg ER. I don't know why doctors don't know this, but I found it deep in some literature. So it makes sense that he is having withdrawals, as he is only receiving about 1/2 of the medication he was getting before the switch. And yes, this is what the withdrawal looks like, not being able to sleep and being a bit wired and grumpy! Also, the literature says to wean from IR and start ER from scratch at 1mg, but that would be so hard to do!

[STARTwHello]

This makes total sense! But 6mg is way too high of a dose, the max is 4 from what I understand. As his body adjusts and the withdrawal evens out, will the XR ultimately work better at a lower dose though? 🤔