Guanfacine/Intuniv: immediate vs. ext... - CHADD's ADHD Pare...

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Guanfacine/Intuniv: immediate vs. extended release??

jem83
jem83

Can anyone share some advice on guanfacine? My son (7) did not tolerate stimulants so we started him on guanfacine immediate release, titrating last summer up to .5mg 3x/day. We had great results at that dosage. Then, for convenience, we decided to a switch to once a day, extended release Intuniv. Because it only comes in 1 or 2mg, we started at 1, saw backsliding, then moved to 2mg, and saw some improvement. It has never worked as well as the immediate release version, however, and recently we have been very frustrated by our son’s heightened impulsiveness. Other things have definitely improved and stayed better—like meltdowns are pretty much gone. But we had such a wonderful period with him last summer for a month or two before trying to switch things up and I kind of wish we’d just left well enough alone. So now we are wondering if we should switch back to the short acting guanfacine (at .5 or maybe .75?); or alternatively move to 3mg Intuniv. Anyone have any insights or experience to share? Thank you in advance!

25 Replies
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Just curious are you working with a Psychiatrist?

Did you try each medication separate? Or did you try the stimulant and try the guanfacine together?

Curious why you changed? If it was working, can you go back. It sounds like you had a good "taste" of what he is like when has good impulse control. I hope you find that again for him.

What has worked best for us is a 24 hours dose of guanfacine at bed time, to help with sleep plus Ritlin in the AM, extended release. We have had the same high dose of Ritlin since we started maybe over 2 years.

As we know every body is very sensitive to even extended from short acting.

I am also not sure how many stimulants you tried, but trust if you are working with a Psychiatrist then you should be in good hands.

Wish you well.

jem83
jem83 in reply to Onthemove1971

Thank you for this reply! We tried the meds all separately--first a series of stimulants (adderall, ritalin, and varieties), all of which resulted in horrible rage--then guanfacine, which eventually had a very good result on the slow acting version. Then a mediocre response on the extended release. We are working with a psychiatrist, but unfortunately it's indirect. We always need to speak to a pediatrician or a therapist who then relays our questions and relays their answer back. I am getting very fed up with this system as it is SO inefficient.

I’m sure you know me by now, we’ve only ever used immediate release. But even though it’s a little bit of a hassle, still worth it! I’d go back to immediate release, that way you don’t need to give more milligrams than you need to, to get the results you once had. Wouldn’t want the blood pressure to drop too low either.

We were actually able to reduce my son from 1.5mg Guanfacine to 1mg, as the Strattera is showing great results. Just an FYI if you end up needing to explore other non-stimulants.

jem83
jem83 in reply to Krispies99

Thanks--I might try reverting to the short acting. I just wonder if it's really the switch to extended release that resulted in the more mediocre results, or just his body adjusting. As you know this is a recurring issue and question that I have. I keep reminding myself that life is SO much better since he has been on the guanfacine, period. We haven't seen a full-blown meltdown in MONTHS. But since we had that brief glimpse of what it's like to be in a great place last summer, I keep hoping to get back there.

I'm so glad strattera/guan combo is working so well for you!

Krispies99
Krispies99 in reply to jem83

My gut tells me that short acting Tenex and extended release Intuniv might be slightly different in the way they work.

And yes, we will probably face that issue of whether it seems they are “outgrowing” their dose. I hope you guys can get back to that sweet spot you were in!

I just started my son on intuniv extended release 2mg. He was taking Ritalin before and it was working ok his focus was maybe 80% and hyperactivity would return by 7:00pm at night. I was willing to deal with that but my son also has a tic disorder that was under control on its own and then when he started Ritalin it aggravated his tic disorder and he began having aggressive head tilts forward and back. He was upset he couldn’t control his head and so was I poor thing. So now that we made the change to intuniv it’s been 3 weeks and he is doing well the only side effects I see are a little more drowsy at times and he was having involuntary urine leaks but that was the first couple of days and then it went away. He’s been doing good and it’s so much easier for him to go to bed now. So far this one is working out for him. I hope this helps.

Wish you well.

Thank you for sharing!

Fat10budda
Fat10budda in reply to wonders2

The exact same thing happened to my daughter. We went down the list of stimulants, tried almost all of them. They worked great, but also they aggravated her tic so badly we both couldn’t deal with it. So I finally gave up on the stimulants and chose to try the extended release Guanificin. It doesn’t work nearly as well as the stimulants, but I’m satisfied with its results. Her tic is gone, she makes all A’s in school, has lots of friends, and I’m not getting any complaints from her teachers. So we are both much happier now.

We also had a brief period of significant improvement on 1mg. We went up to 2 mg when it started to work less and it was too sedating. Have you tried any other non stimulants? My son cannot tolerate stimulants either.

jem83
jem83 in reply to Learning2

No, we haven't tried any other non-stimulants, but krispies99 (above) has seen really good results from Strattera.

My son has been on intuiv alone before, it worked ok but he is now one intuiv 2 mg and Vyvanse 30 mg per day. It’s my understanding that they are for different things. The intuiv is more for social interaction and the Vyvanse is more for focus. Depending on what you’re looking to help him with, that should be your guide.

Have you tried different stimulants? The good thing about the stimulants is that they work right away so you’ll know if he tolerates them or not. We’ve tried at least four different before landing on Vyvanse and for our son it works well. There were others that didn’t. One made him zombie like and tired, the dr of course was like that shoots happen, they’re all the same chemically. But they don’t all hit kids the same way. If you’re looking for more focus you might want to try quillichew or Vyvanse again.

As for intuiv, I’m not sure it does THAT much for my son but right now the combination seems good so I don’t want to change anything. I am thinking of weaning him off of it.

jem83
jem83 in reply to Rebryan

We haver tried Adderall and Ritalin, as well as Quillivant. I hesitate to try Vyvanse because it is a relative of Adderall, and wow, was that a fail for our son. I think we are going to hold a while before trying stimulants again. We actually had some surprisingly good results with Guanfacine--better than we'd been led to expect--so I just wish we could find the right balance again. Anyway, thanks for your reply!

Rebryan
Rebryan in reply to jem83

It’s SO frustrating to try to get the right combination/dosage of things. We are in a good spot right now through lots of trial and error. I find the process exhausting.

I wish you and your son good luck!

My 14 yo is still on 2 mg of Intuniv. 3 mg made him so sleepy we’ve never gone back to that dose. The Vyvanse worked well but now that we have hit puberty we find he doesn’t need it. It used to make him so moody. There is a lot of advice to give the Intuniv at night if it makes the child too sleepy.

jem83
jem83 in reply to coopha

My son had sleepiness a little bit in the beginning but it hasn't been much of an issue, fortunately. So we do give it in the morning. Still, something is just not quite working as well as it could. I've heard things change at puberty! That's still a few years away for us.

Hi jem83, my son is 9 and is taking Guanfacine as well. Stimulants never worked for us, we tried 4 different ones and each, he was overly aggressive with destructive behavior. We tried a combo of stimulant + Guanfacine but it did not work either. He is taking a 2mg dose in the morning and it is an extended release. He is also taking sertraline at 37.5mg as his anxiety makes ADHD worse. This combo suits us best along with therapy, positive parenting, yada yada.

We had a similar issue as you at some point. We were for a long time at 1mg and then we saw a change of behavior which prompted to up the dose to 2mg. It did not work at first, it made him extra tired and without any energy so we went back to 1 mg but I supplemented with magnesium. It kinda of worked for a while until we had to try a 2mg dose again which worked after a second try. My point is that sometimes kids are going through a growth spurt that can affect them in many ways (pains, hormones, etc) and while we are tempted to up the dose, it may be slightly too early to do so. If the 2mg is too much, you will see it quite fast and my recommendation would be to go back to 1mg or give 1.5mg to see if it does the trick. I know that Guanfacine is not supposed to be cut in half but sometimes, well, it works. The transition lasted about 4-6 months for us. Try to see if something else is going on as well. Maybe the pandemic is affecting his behavior as well? We have seen with our son that sometimes it is really difficult to pinpoint what may be going on, kids with ADHD have issues expressing their feelings and emotions and that will affect their behavior. Hang in there, it must be a difficult transition and it will pass. Hugs.

jem83
jem83 in reply to christelferrer

Thank you so much for sharing your experience! You sure are right that ADHD kiddos (my son for sure) can have trouble pinpointing feelings and emotions. I try to be patient but sometimes I lose it with him. I think my husband and I could deal with it okay if it was just the three of us, but my 7-year old has two little brothers (3.5 and 1) and he is always harassing the 3 year old. It's like all his impulsivity concentrates on his little brother. Anyway, thank you for the support :)

christelferrer
christelferrer in reply to jem83

This is a great group. Welcome and share :-).

Thank you all for the support. This is such a wonderful group to be part of.

My 7yr old son was taking short acting guanfacine and we eventually switched to Intuniv but noticed it wasn’t the same effect. I am not a doctor and do not prescribe medication so I would urge you to do your own research, but when I looked through the medication literature I found the body can easily absorb the short acting form at a higher concentration than the extended release form. In other words taking 3 -0.5mg tabs in the course of 14 hours (awake hours) is not the same as taking 1- 2mg xr tab because the body takes 24 hours to “work through” 2 mg. There are line graphs available that show the comparison of both forms and the release of the extended form is at a much lower concentration and over a much longer period of time.

jem83
jem83 in reply to Stefanyc1

This is incredibly helpful and accords with what I suspect. Thank you for your insight! I think we will be switching back pending discussion with the psychiatrist.

Krispies99
Krispies99 in reply to Stefanyc1

Very helpful info!!

jem83
jem83 in reply to Stefanyc1

Wanted to let you and Krispies99 know that I learned some interesting tidbits from a direct conversation with a trusted child psychiatrist, who confirms what you suggested:

"The daily dose of Intuniv 2mg is equivalent to a 1mg daily dose of immediate release (IR) guanfacine. [Your son] was taking 1.5mg per day of IR guanfacine. Intuniv 3mg is the equivalent dose." He also wrote: " But honestly I am not a fan of Intuniv’s sustained release technology. The problem of IR guanfacine is the inconvenience of repeated doses in the day, but the effect is a bit crisper. The morning dose ‘kicks in’ faster than Intuniv does, and the second dose usually extends the effect longer than the intuniv does. Most kids to pretty well on a twice per day regimen of IR guanfacine since the effect, on average, lasts about 8 hours after each dose. Three times per day is a bit more than is needed, usually." He also said, incidentally, that Intuniv is not as effective when taken in the evening than it is in the morning, even though it is billed as being so.

Krispies99
Krispies99 in reply to jem83

Thank you!!

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

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