Intuniv in Nov... anyone get/try yet? | ADHD Information
Read that Intuniv (the extended-release Tenex) is available now.... can anyone confirm and has anyone tried yet?Audrey
My DS took dose #5 today. Unfortunately we have not seen good results yet. We are hoping that it is because he is on the 1 mg starter dose. Based on his weight he needs 2mg dosage. His Psychiatrist is asking us to hang in there for the first 2 weeks before we give up on another attempt to medicate/help our son!! I will keep posting his response to this medication if you want.
He was only on Tenex for 2 weeks before the Intuniv became available. He was having great results with all of his ADHD/ODD symptoms but his Psych. thought this would be the better choice for him since it works for 24 hours and is more specific for impulse control and anger issues.
We are so hopeful that this it THE ONE!!! 4 yrs of different meds with little or no results or severe bad reactions!!! Arghhhhh!!!! So frustrating!!
DS diagnosed with ADHD/ODD and possible mood disorder. Age 6
jaxx, my pediatrician said that the effective dose is double or more of the short-acting dose... so definitely wait for it to go up before you give up.
We have a script for 3mg, but my insurance doesn't cover it so I'm waiting to collect the cash before trying out.
Audrey
[QUOTE=zacnautysmommy]
aesposito
Thank you for telling me this all of this ADHD is still pretty new to me. My son was diagnosed last year and until now his meds were working but it makes me feel better to hear and talk to people that are either taking the meds together or have children who are. So again thank you very much.
[/QUOTE]You are welcome!
Audrey
We just got a prescription for intuniv... I'm anxious to see how my son will do with it and will let you know... i sure hope insurance will cover this one.
he's 8 - and dx aspergers & adhd.
just learned about this medication and I am definitely going to be following this thread. Thanks for sharing your experiences so far and continued updates! We just went back to the psych today for a med check. He suggested that we up the Intuniv to 3mg to see if that helps more. We started taking 1mg for 6 days and saw no real changes, then 2mg for 5 days with maybe some small improvements the past 2 days, so he said that we could go up to 3mg starting tomorrow.
Has anyone else gotten up to 3mg and had more success?
My daughter is 7 years old and has ADD/Mood issues (anger, oppositional, etc). We tried other meds (adderal, focalin) and they made her worse. They switched her to 1mg Tenex this summer and it has helped tremendously. We were anxiously awaiting Intuniv but we were skeptical bc we heard meds had to be increased for Intuniv (2mg intuniv for 1mg Tenex)but we decided to start with the 1mg because we hate meds. I am so impressed with this med. It seems exactly what she needs. We started it almost a week ago and I definitely see improvement. I want to encourage those parents that posted with issues like my daughter's (add/mood, anger) to try ONLY Intuniv. The other meds (adderal, etc) aggravate mood disorders so trying your child on Intuniv alone may do the trick. If the other meds are aggravating the mood issues (as it did for my daughter) you are not seeing a true result from Intuniv. My daughter is doing well on only 1 mg of Intuniv. I feel like it is a miracle because her behavior this spring/summer was totally out of control. Now she is a ton of fun and we can finally enjoy her.
My son is 7 and is on metadate CR 40 mg and he developed a tic and we went to the doc today and they prescribed him intuniv to take with his metadate. Has anyone ever heard of this. I looked up on the internet but since it is a fairly new med i cant find much on it. But one stufy showed that even though it didnt cause and deaths that it shouldnt be taken with any stimulant medication. Yet my doctor said it was fine, just need some advice please
zacnautysmommy,Intuniv is just long-acting Tenex, which has been prescribed alongside stimulants for several years without any known problems.
Tenex is also well-known for its ability to reduce tics, and in fact my son's tics completely disappeared when he started it (he blew on stuff a lot and cleared his throat).
Audrey
aesposito40149.5644328704
aesposito
Thank you for telling me this all of this ADHD is still pretty new to me. My son was diagnosed last year and until now his meds were working but it makes me feel better to hear and talk to people that are either taking the meds together or have children who are. So again thank you very much.
Shire did some specific studies about the safety taking Intuniv along with a stim and found it to be safe. I think many kids will end up taking both, only time will tell about how effective Intuniv is alone. My son just increased to 3mg of Intuniv today and is also taking Concerta 36mg.I had an appointment with my child's doctor on Monday. We decided to wait until Winter Break to try it.
I asked him what he's seen so far (he's had it before the release b/c he's participating in a pilot study). He said everybody decided to wait until Thanksgiving Break or Winter Break to try it, so he has no experience with it yet. However, the research shows significant benefits to ADHD control in the mornings, vs. problems people were experiencing beforehand.
After the way my child has been stealing Halloween candy and bothering his brother in the mornings lately, I've decided that we're going to try switching from guanfacine 2x per day to Intuniv over Winter Break. I'm very hopeful about it!
Looking forward to hearing other people's experiences with it!
My son is on Day 8 and we are now at 2mg. Since we increased he seems more irritable and angry, but he is like that anyway so I'm not sure if it is the Tenex or just him. These are the symptoms that we desperately need to control! Nothing seems to be working. He is also taking Concerta 36mg. I'm really hoping that the Intuniv works, but I'm not sure it is going to help
We go back to the psych on Tuesday to see how he is doing and we'll go from there.
Day 14 2mg- Continue to see behavior improvement. Not
consistently but improvement for sure. The medication
doesn't seem to kick in for 4 hours though. That concerns
me for school! Hopefully the more the longer it is in his
system the more it will even out. I will give it 1 full
month of 2mg before I will truly assess whether this is
really the right medication. He continues to get very
sleepy in the afternoon and has taken a nap every day
around 3pm. He still goes to bed before 9pm so the nap is
not a problem. I am concerned about him falling asleep in
class.
Ajweeks please keep posted on your son's behavior. He
probably as not been on it long enough yet either. All of
the info I have on it says 2-4 weeks before you see
improvement. So let's hang in there!
[QUOTE=jaxx]Day 11- Well based on daily behavior report from teacher
there seems to be some improvement this week. He was bumped
up to 2 mg on Saturday. He wakes up bouncing off walls and
full of energy. Med seems to kick in in the afternoon.He
definitely gets sleepy earlier than he used to. He falls
asleep between 7-8pm and wakes up between 5-7am.
Since I work full-time I haven't gotten to see the full day
effect . I will have 4 days off with him for Thanksgiving
and will hopefully see improvement each day.
Good luck to all ! Please keep updating us MominKC !
Happy Thanksgiving to all! [/QUOTE]
Thanks for the updates, and for the details about parts of day where you're seeing more or less control. What time of day is he taking Intuniv? Is he taking anything else as well?
Intuniv is all he is taking at the moment. I didn't noticethe sleepiness today. I did see periods of over
excitement(he acts giddy/drunk/overly happy and silly) like
he acted pre-meds. I asked my husband if he watched him
swallow pill today. I am concerned with his behavior in
school tomorrow. No nap today either. I just hope things
even out soon. This med. trial stuff is exhausing
[QUOTE=Mom2ADHDboy] [QUOTE=jaxx]Day 11- Well based on
daily behavior report from teacher there seems to be some
improvement this week. He was bumped up to 2 mg on
Saturday. He wakes up bouncing off walls and full of
energy. Med seems to kick in in the afternoon.He
definitely gets sleepy earlier than he used to. He falls
asleep between 7-8pm and wakes up between 5-7am. Since I
work full-time I haven't gotten to see the full day
effect . I will have 4 days off with him for Thanksgiving
and will hopefully see improvement each day. Good luck to
all ! Please keep updating us MominKC ! Happy
Thanksgiving to all! [/QUOTE]
Thanks for the updates, and for the details about
parts of day where you're seeing more or less control.
What time of day is he taking Intuniv? Is he taking
anything else as well?
Mom2ADHDboy. I have been giving it to him at 7am.Day 11- Well based on daily behavior report from teacher
there seems to be some improvement this week. He was bumped
up to 2 mg on Saturday. He wakes up bouncing off walls and
full of energy. Med seems to kick in in the afternoon.He
definitely gets sleepy earlier than he used to. He falls
asleep between 7-8pm and wakes up between 5-7am.
Since I work full-time I haven't gotten to see the full day
effect . I will have 4 days off with him for Thanksgiving
and will hopefully see improvement each day.
Good luck to all ! Please keep updating us MominKC !
Happy Thanksgiving to all!
We are starting the new Intuniv tomorrow as well for my 7yo son. Had been on 1/4 mg of Tenex in a.m. (plus 18 mg Concerta) and 1/2 mg of Tenex at night. That was great for two months really taking the edge off, but we've seen the impulsivity, frustration and anxiety slowly creep back up. We were going to just increase the Tenex a.m. dosage, but our dr. recommended trying the Intuniv. Will post our experiences for everyone ... and hope you all do the same! Would love to hear how it continues to go.
Best of luck to all! I'm tired of the roller coaster for my suspected ADHD/confirmed gifted 7yo son. He's so great when the meds work and struggles so much when they don't ...
I hope others are having success as well!
how did you get to 3mg? did you start with 1mg? and go up to 2mg and then 3mg?
we received a 1 weeks supply of 1mg and then only 2mg ... my son is 8 1/2 (almost) and in 3rd grade.
i decided to hold off starting the med.. as we're have an appointment w/ a psychiatrist and I wanted to get another opinion before i start on something that can take weeks to work ... The intuniv was prescribed by a development pediatrician after my son had a bad reaction to vyvanse.
i am glad though that you are having success - ajweeks - particularly since your son has the same dx as mine ...
Yes, we started at 1mg and my son took that for 6 days (the doctor said that we could move up quicker) and then he took 2mg for 5 days. We started seeing small improvements on 2mg, but not much, so the doctor had us move up to 3mg as that is the dosage that most kids did the best on during clinical trials. The 3 mg is definitely an improvement and he is doing really well now. I definitely recommend giving Intuniv a try. Yes, it takes a few weeks to slowly increase the dosage and see if it will work, but it is worth the wait. My son has had no negative side effects.
Hi,
DD started on this 2 weeks ago. Did fine in the beginning...now our evenings are out of control. I am wondering if it will get better with time?
Does anyone know?
Finally got the money together and found a pharmacy in the area that carried (took three tries!).... will be picking up Monday.Ped is starting son at 3mg dose as he already takes 1.5 mg twice a day. I anticipate a few days of sleepiness as he gets used to it.
Audrey
we are just try intuniv 1mg we start tomorrow night. We are taking it with vyvance. that starttera was not working having trouble with sleeping at night. This is a new med. so is any body taking this with vyvance. We are on week 4 at 2mg. In all honesty I am very pleased
with his school behavior chart. He is doing much better
there. I really thing he needs increased to 3mg and will
confirm with psych. At next Wed. follow-up appt. He has
evening out of control behavior. He takes his med at 6:30
am and in evenings it doesn't seem to be `covering him. He
is not on any other meds. Just hoping the 3mg will do it. I
have to pay 80.00 a month. If it works will be worth it for
sure!! I am just still hoping for an end to this
craziness!! My nerves are shot
Went to Psych. yesterday. We were hoping to be able to
increase dose to 3mg because he has started to come home
with bad behavior reports again. Dr took his Blood
pressure and it was 86/50. She is not comfortable
increasing dose with his low B/P especially since he is
on the lower end of weight scale for this drug. I haven't
heard anyone else mention that this has been an issue. He
weighs 60lb. THe dosage chart is 2mg 59-89 lbs . So she
will not increase him at this time. She feels that the
Holidays and his recent birthday could have caused him to
have this set-back. We will continue with 2mg and monitor
his B/P. If he drops to top number 80 or lower we are to
hold med and call her. URGHGHG!! Another roadblock to
his 4 year attempt to be medicated!
jaxx, I'm so sorry. I've never seen a dosage chart with weights like that. My almost 8 year old is 58 lbs. and is taking 3mg. What I have read is that the dosage range is .05-.08mg/kg weight for initial benefits and then possibly up to .12mg/kg weight for increased benefit if tolerated well.So my son is approx. 26kg so his optimal dosage range is 1.3mg-3.12mg. For your son it would be 1.35mg-3.24mg for 27kg weight.
What should your son's BP be? Does he feel dizzy?
I think Dr. was looking at the initial start-up chart like you mentioned. She was weighing the benefits / to side effects. His pressure should be 110-119 over 74-78. He has times where he feels very tired and sort of sluggish but then perks back up. I believe that is when he is having a blood pressure drop.
Yesterday he came home from school with another bad report. The teacher sent home note stating that he was trying to kiss a girl and she was running from him and got hurt. Teacher stated that if DS doesn't keep his hands to himself today that he will spend the day in the Principal's office while the rest of his class has party.
He got to wear new pajamas to school today because they are having last day of school party day before Christmas break. They will be making decortations and watching the Polar Express movie. I am a nervous wreck wondering if he is able to control himself today! I went over and over with him this morning how important it was to control himself today!! He was so excited as soon as he woke up this morning and running around house making noises, touching things he shouldn't, super duper HYPER!!!! My husband and I almost kept him home and told him that we were considering it. He insisted that he could control his behavior. Please pray with me for him to have at least a good enough day to be able to participate in the activities.
jaxx,Does he have an IEP? Keeping him in the office all day could be considered discriminatory and a violation of federal IDEA and FAPE rules.....
Audrey
Finally scraped together the money and gave him the 3mg this afternoon on the theory that if it made him super sleepy, it would at least kick in around bedtime.
I'll keep you posted.
Audrey
Audrey,
No IEP yet. We started the 504 process in September and are awaiting the 2nd part of that. This is a very slow process. We were hoping the 504 would be enough.
our dev. ped prescribed intuniv however, we sent to a new psychiatrist who suggested we try daytrana instead ...our insurance didn't cover it so he filed a form w/them to see if they would ...
i'd rather try something that works immediately and is in/out of the system and see if that helps instead of something we need to build up over a few weeks...
we'll see --
Jaxx,
Section 504 specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. So make sure you address things like being excluded from the party.... that's illegal and they must make accommodations for your son to attend.
FYI, it is perfectly legal to remove your son from the party for disciplinary issues AFTER it starts, but that's another story for another time.
Hopefully the 504 will be enough. Unfortunately we had to move further to an IEP for our son. But a 504 covers a lot of ground.... and a lot of schools will try to get around it.... so don't let them.
Audrey
Thanks for info Audrey! I read up on IDEA and FAPE rule!
I know we have a long road ahead of us! THe IEP will come
soon after the 504 I feel quite sure unless we get the
right dosage and combination of medication.
He did great in school today. All good marks on his
behavior chart!! A lot of stress and worry for nothing. I
did call the guidence counselor today and told her about
the note he came home with and that I wanted a phone
call if he was sent to the office today so that I could
have someone pick him up.
I am monitoring his blood pressure and going to try to
convince Dr. to up Intuniv to 3 mg if he stays above 100
(top number)/systolic.