Experience with Intuniv (guanfacine)?

[Anonymous]

We need to change DS's ADHD medication. He's primarily inattentive/impulsive, not hyperactive. The main thing we're looking for in medication is improved attention, executive functioning, working memory, etc. He's been on Focalin a couple of months, building up to 20 mgs, but we're not seeing enough benefits to outweigh the negatives - primarily he's losing too much weight and we've recently noticed a slight tic. My DH also has ADHD and has tried Concerta and Stratera with no effect and we're assuming they'll be no more effective for DS so our doctor asked us to consider Intuniv. I understand it's been around a while as a blood pressure medication but is newly available as an ADHD medication. I'm just beginning to research it and saw over the last few months a least a few people here mentioned using it. So, how long has your child been using it and what do you think? Thanks!

[Anonymous]

my dd (almost 5) does not take intuniv (it's a time release med), but she takes guanfacine. only 1/2 mg, which is 1/2 the recommended dosage. she presents at this point with combined type adhd. the guanfacine has been positively transformative for her impulsiveness/hyperactivity. her body is much calmer and she seems much more able to accept the concept of taking a beat before reacting violently to disappointments and frustrations. part of this is also behavioral work we've done with her, but the guanfacine has made her more available to this approach.

the guanfacine has done very little with her inattentiveness, and we also had to keep the amount of the meds low because she was a little too relaxed. plus she had trouble staying asleep at night with an effective dose at nighttime because guanfacine can overactivate rem sleep (she was having nightmares).

guanfacine is a great med -- very few side effects -- but would you consider starting with the non-time release type to see how it would affect your child? dr conlon is our prescribing dr and he is very knowledgable about it.

good luck.

[Anonymous]

Intuniv works great for my DS. We just switched over from tenex and its much easier. The key is to keep teh dose low. DS does not have fatigue issues with the low dose. No side effects at all, actually.

[Anonymous]

OP here. Thanks for the feedback. It seems like the guanfacine would be a good thing to try and we absolutely would consider the short acting dose. We're seeing Dr. Conlon on Tuesday (we saw the regular pediatrician yesterday - he's also good and knew we'd be seeing Dr. Conlon soon) and will ask him about it. Thanks again!

[Anonymous]

Going on our 3rd month with it -- for a 10 yr old. Helps with the tics (side benefit), with the impulsivity/hyperactivity, and somewhat with the attentiveness. We're going from 2 mgs to 3 to see if the attentiveness can improve. Side effects so far are minimal and I am thrilled. Sleeping well, eating well. Only problem has been a tendency to urinate a bit at night in the bed, which requires an underwear change... but that is subsiding. A bit drowsy from time to time in the late afternoon. I would suggest it for any kid that has bombed out on stimulants and strattera.

[Anonymous]

Anonymous wrote:Intuniv works great for my DS. We just switched over from tenex and its much easier. The key is to keep teh dose low. DS does not have fatigue issues with the low dose. No side effects at all, actually.

But you are clear that Intuniv is the time-release version of Tenex? Both are guanfacine.

[Anonymous]

PP, yes I know its the same drug. Thats why i said it was easier, we no longer have to worry about the afternoon dose.

[Anonymous]

My son (12-years-old) has been taking intuniv guanfacine for about 3 months. He was sleepy in the beginning. The doctor suggested giving it to me before bed, but he was too sleepy in the morning. Now I give it to him at 6-7pm every night and there is no more evidence of sleepiness. Attentiveness is a little better. His grades are better, he is a little calmer. Lesser ticks. (focalin was a disaster for my son, it created more ticks than I had ever seen). So far a success, but I can’t find any studies over 9 weeks. Peace and love to all!

[Anonymous]

Thanks, PP. What dose is your DS on? How long (at at what dose) did you give it in the morning before trying to give it at night?

[Anonymous]

I was the PP on 3/31. Just to let you know that the urination at night is gone now--

However, DC still struggles with sleepiness during the day, especially in late afternoon. We will lower the dose from 3 mg to 2 mg for the summer. Probably in the next few weeks since the end of school is not very academic...

[Anonymous]

FYI, Both Tenex and Intuniv have the same active ingredient (guanfacine). However, they act differently from each other, and it is a mistake to consider Intuniv as a simple "long-acting version" of Tenex. The difference has to do with the time-release kinetecs of Intuniv in the body (see article: http://www.additudemag.com/adhd/article/8177.html).

Our son was on Concerta from age 6-10. In addition to ADHD, he has suffered from mild oral/motor tics. So, he took Tenex to help reduce tics, which were exacerbated by the Concerta stimulant.

At age 10, when Intuniv was introduced, we switched him to Intuniv, discontinued Tenex, and slowly dropped Concerta. We understand it is important to add Intuniv in 1 mg increments, about one week at a time. It really took us about 4 weeks to assess whether Intuniv was helping the ADHD as well as Concerta with respect to hyperactivity, inattention and impulsivity.

Our assessment is that our son has definitely benefited from the elimination of certain side effects from Concerta -- namely, sleeplessness and reduction in appetite. He now sleeps VERY well at night, and eats heartily. His tics seem completely gone.

His hyperactivity is definitely reduced significantly. He is much calmer and more even-keeled. His impulsivity is also noticeably improved versus no medication. Our sense is that Concerta addressed his inattention a bit better. However, on balance -- and considering overall effect and side effects -- we think that Intuniv is the better fit.

IMPORTANT FINAL NOTE: Intuniv is definitely not Tenex. The effect of Intuniv on our son is very different from the dose of Tenex that he had been taking along with Concerta for 3+ years. If you do try Intuniv, consider sticking with it for at least 4 weeks, and remember to titrate up in mg slowly. Sleepiness is the main side effect, but for our son, the sleepiness subsided signficantly after about 4 weeks. It's my understanding that if sleepiness is an obvious and major problem, then you have probably titrated up to quickly in mg, or you should reduce to the next level lower of mg.

[Anonymous]

I'm the 5/13 poster -- just an update. DC is still on Intuniv and at the lower 2 mg dose. Never went back to 3 mg. Works OK-- not as brilliant as a stimulant, but no side effects that we can see.

[Anonymous]

OP here. Our now 7 yo has been taking Intuniv since about May and we feel he's benefitted from it. His tics are gone (it got pretty bad at the end) and his weight/grow are back on track. We didn't see any real improvement on stimulant medication so I can't really compare it to that (other than tics, appetite suppression and wakefulness are no longer issues). I can say that DS seems more 'settled'. DS is primarily inattentive, not hyperactive, so it's kind of hard to explain the 'settled' effect. He just seems more in control of himself and present - if that makes any sense. His teachers have also noticed a difference from when he was on stimulant medication, no medication and the difference in 1 mg vs 2 mg of Intuniv. Last year, we didn't tritrate above 1 mg because he seemed to be doing well at that dose and we saw no reason to increase it. This school year, the 1 mg wasn't nearly as effective so we increased to 2 mg and saw improvement. I can tell you that winter break was 1,000 times better this year than last year. He also had no problems transitioning back to school (unlike last year). Intinuv has been a good choice for us.

[Anonymous]

Glad to hear good stuff about Intuniv. DS (7.5 years old) started it a week ago at 1 mg. It's hard to say yet that the Intuniv is the cause, but we have seen a lot of the good effects people are describing (DS is continuing on a stimulant as well, but the stimulant's effectiveness had decreased noticeably prior to starting Intuniv in combination). Also interesting to hear about the bed-wetting as DS has had a couple of incidents since starting (one our fault for not making him pee before bed on New Years Eve...). He'll go up to 2 mg next week. The transition back to school has been easy and his classroom behavior has been a lot better.

[Anonymous]

just wanted to say I'm blogging day by day our experience with Intuniv for my 7 almost 8 y.o son ADHD-HI. Only on day 2 of loading does, but so far no side effects at all, and perhaps slight improvement at home