messy. crazy. amazing. joyful.

We're not all officially ADHD. Dad's unofficial. Our ten-year-old twins have ADHD. Our seven-year old wants to have it because everyone is always talking about it. Our three year old has ADHD--just because she's three. And me, Mom, I think it's contagious. Who can remain untouched in a house where shoes seem to be lost every morning, instructions are routinely thrown aside, and fights erupt over which continent capybaras come from?

Friday, February 10, 2012

Is Intuniv Causing Weight Gain?


I learned a new word this year, communited:  a fracture in which bone is broken, splintered or crushed into a number of pieces. Observe my lovely clavicle.


This is just one of the many reasons I haven’t blogged for a million years. Moving a few times has something to do with it too.

But this blog is my own personal record of the kids’ medications, doses, timelines, etc., and since we’ve changed Luke’s meds, I’ve got to get it on the record. 

The impetus for me feeling like we should consider changing meds was his weight. He started wrestling this year, and I was surprised when he weighed in at more than most kids his age. In the last half year or so, he has gone from a pretty skinny kid to the 92 percentile on the weight scale for his age. Such a quick gain didn’t seem healthy. I don’t think there’s a significant difference in how much he has stared at screens. He’s always had as much video, computer, and television as I would possibly allow him, but I’m pretty strict. I could only think of two things that could be the cause: school lunch or Intuniv.

Kinda skinny, right?

I’m really not a fan of school lunch. I used to buy it for the kids only once or twice a week. But things have been so hectic, I’ve succumbed to the easiness of an online payment. And I’m still doing it, despite my concerns! Gotta get life under control here and make lunches…

Here we have a mountain man in the 4th grade history play. Not quite as lean, and I don't know why. Could this just be his body changing in prepubescence? (I've always hated that word.) Changes that might go unnoticed by others always have a way of freaking me out because I'm paranoid about having my child take drugs. Yes, they help him, but in the back of my mind, the worried dialogue careers. Wait a minute, I've noticed a change!! Is his body composition changing?! Is he more lethargic?! Is something bad happening to him?! Aaaahhh, save the neurotic mother and the lab-rat child.

I knew that weight gain was a side effect of Intuniv, (not listed on the official Intuniv web site but on other sites), so I decided to talk to our pediatrician about it. I have also felt like Luke has become more and more lethargic and wondered if that was a side effect from Intuniv. It is an antihypertensive (lowers blood pressure) after all.

So our pediatrician suggested we try a stimulant again. I busted out my records and told him that even with the smallest doses of Vyvanse, Focalin, or Daytrana, Luke was completely buzzed and wouldn’t fall asleep. So we talked back and forth trying to decide on a new treatment that might work better. We decided on trying a teeny, tiny dose of Vyvanse in the morning and keeping the Intuniv but at a smaller dose and giving it to him at night before he goes to sleep. Intuniv is supposed to last for 24 hours, so the time you give the dose shouldn’t really matter, but my pediatrician explained that there is an arc to the release of the drug, building up in the system and tapering off. So he told me to just give it a try. You know, experiences with infertility, cancer, and ADHD have taught me that that’s what medicine comes down to anyway—give it a try. I’ve probably mentioned that before.

So Luke is now on 5, yes, 5 mg of Vyvanse a day. The smallest pill available is 20 mg, so I have to open a capsule and divide it into 4 parts. It ends up as barely a breath of white powder in the bottom of a cup. It seems almost ridiculous, but I have read that some people can metabolize medicine so quickly that they can only take small doses. Maybe that’s true for Luke.

We tapered the Intuniv down from 3 mg to 1.5 mg (half a pill) and have been giving it to Luke before he goes to sleep. We also give him a dose of melatonin. He does have a hard time falling asleep if he doesn’t have the Intuniv, so I don’t know that we can completely eliminate it.

I haven’t noticed a ton of difference in his behavior, though his school teacher thinks he is doing better. He has still had some meltdowns at school but fewer. That’s where we are for now.

44 comments:

  1. I have similar concerns with my son, Cody, who takes 2 mg of Intuniv in the evening around 9:00 PM. His weight has increased drastically since he started taking this drug six months ago. I don't think it is prepubescence considering he is only 9 years old. I monitor what he eats at home, and he too eats school lunches- but the school has been informed, he only is allowed to eat what the lunch menu states- and no extras. The school menu is pretty healthy. I think I will speak to his pediatrician and ask about a dose of vivance in the morning too and reduce him down some on the intuniv. I worry as well about the amount of weight he has gained so fast. He is adopted and has a history of heart disease in his family as well as a broad problem with Diabetes 2. The extra weight certainly is not good. Mentally, I think his self esteem has reduced due to the extra weight and the teasing in school as well.

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    1. Hope all goes well with the Vyvanse. My doctor told me that the Vyvanse helps with focus and the Intuniv helps with my son's meltdowns. So far it seems to be okay having him on both.

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  2. I too have concerns with my son and weight gain on Intuniv. He is 10 years old and went from 70 lbs to 92 lbs in just a few months. Intuniv has certainly evened him out. The stimulants helped him focus but made him so irritable. I thought/think that maybe some of the weight gain could be attributed to a funky metabolism period after coming off a stimulant. His psychiatrist said that Intuniv doesn't cause weight gain, but over 20 lbs is a-lot which is prompting me to search a little more. If only there were 1 magic pill. I hope the new combo continues to work for you all.

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  3. We also have the same concerns about the weight gain.Our Daughter use to be on the other end of the spectrem. When she was on concerta we would have to worry about her eating enough. Since being on Intuniv she has gained around 35 pounds in about 5 months. She is as active as she was before this medicine. Her grades and behavior has improved greatly. However the quick weight gain is not healthy.

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  4. I am doubtful that Intuniv is really culprit of the weight gain, but rather the absence of stimulants and perhaps some effect from the slowed heart rate that comes with Intuniv. Imagine if your own body had gotten used to taking stimulants and then those stimulants were taken away. The exercise and diet that were appropriate while on the stimulants would no longer be metabolized in the way and weight gain would occur.

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    1. This is the exactly what the doctor says, but I know what I and many others have observed. I think there needs to be more testing and research on this particular use of the drug and it should be tested specifically on people with ADHD because it is possible they metabolize the drug differently then the general population. Because the official listed side effects are vague, medical professionals cannot say conclusively that the drug causes weight gain. I think more testing is in order especially for pediatric use.

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  5. How is Luke doing now? My son's story is similar--he was a skinny little guy with the usual energy levels but lots of difficulty with executive function and focus. The neurologist recommended the Intuniv and his weight gain has been far above average. Now (6th grade) the school sent home a note about his BMI.His self-esteem is zero and this is NOT the time of life for that. Any advice?

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    1. Luke has definitely lost weight and is at a healthy weight, but it's hard to know if it's because we've halved the Intuniv dose, added a stimulant, or he's having a growth spurt. But he's more active and I think that's great.

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  6. These comments were extremely helpful. My husband and I have been overwhelmed by comments from others saying that our son has really "filled out". He has gained 15 pounds in the last few months when his average weight gain has been 6-7 pounds per year. He used to run and run everywhere and now he falls asleep the minute he gets home. We will look at some different options. It is so difficult to find balance. It saddens me.

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  7. I am in my late twenties and experienced 35lb weight gain in 6 months after starting Intuniv. Doctor says it doesn't cause weight gain, but I say how can this be if there are SO many people with the same complaint. I was never on a stimulant before.

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    1. I am 39 and I gained weight as soon as I started the higher doses of intuniv and a lot of other side effects

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  8. My son is 9 1/2. He's been on Intuniv since November, and we're in the same boat. He started off skinnier than his already thin older sister (I mean, practically a walking skeleton), to now looking chubby- especially in the face. It has me concerned. I'm up at 3 am, thinking about how he was earlier this evening when we took him and his friend to one of those Bounce places. His body is bigger/heavier, but his face is where it's really noticeable. Also, he is having headaches.. especially when he gets overheated or really upset (tonight's headache seemed to be affecting his vision- he kept blinking). He's currently on 4 mg of Intuniv, and on the smallest dose of Clonidine to help him sleep (though it doesn't work that great). The Dr wants to bump my son up to 6mg, but I said that I wanted to wean him off. (I have just enough pills from lower doses that I should be able to do it, I hope). We had terrible luck with stimulant meds (lowest dose of Concerta seemed to work the longest). He just got too angry. The Intuniv has helped tremendously with that, but it's not enough any more. I'm at my wits end...

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    1. This story is to a T my son and he is 9 as well. Just wondering what ever came about with the meds? Did you switch him to something else?

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  9. Its so hard to dose children because they can't explain HOW its making them feel. Drs are quick to RX drugs without giving other options first.

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  10. Interesting. My son has had a 15lb weight gain in the last 4-6 months. He is 9 and taking 4mg Intuniv for Tourette Syndrome. We just started backing him down this week to 3mg due to somnolence. The weight has been a big concern for us and I didn't think it was normal. Glad to find this site.

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  11. Misery does love company, I suspect. We are having the same situation with our 11 year old son. He has ballooned over the summer. We are at 3mg of Intuniv. He used to be in the bottom 5th percentile for weight until we started Intuniv in May. It is August now, and he is at the 85th percentile! His face is round and puffy, and he has a solid gut that extends throughout his entire abdominal region and up toward his chest. We went school shopping. He finished last school year in size 12 slim and now wears 14 husky which need to be hemmed. That is just too drastic in less than three months. God bless all the children represented here and we parents, too. There must be an easier answer.

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  12. Same issue for my 12y.o 7th grader. We saw the neurologist today and I told him about my concerns. He started 1mg intuniv june 20 at 66.4kg(about 144 lbs) and is now 71.4kg(157 lbs). We walked out of there w/a renewed script for adderall. I told him I know that has worked in the past and had too many concerns about intuniv not the least of which is the lethargy, weight gain, and expense. Adderall was stopped in April due to depression concerns. He metabolizes med well and was on 5mg adderall until 6th grade, now 10mg. Thanks for providing this page so we don't think we're crazy. My kid plays football, does kid crossfit, and when not at crossfit is doing kickboxing and boxing, somtimes for 2 hours.

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  13. I noticed the weight gain in my normally very skinny 8 year old daughter. 12 pounds in 3 months, almost 1/4 of her total wight prior to starting intuniv, most noticable in the face. No where is weight gain mentioned as a side effect, and the psychiatrist said she had not seen weight gain in other clients. She also does not sleep well at night, either having nightmares or just waking up, wide wake. My question: did kids lose the weight when they decreased or stopped the intuniv?

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  14. Thank you to everyone for posting their experience with this medication. I am a nurse and thought that at first that the weight gain can't be from intuniv it is not listed as a side effect. But after eliminating all possible causes, no change in diet, no change in activity level (very active) and a 35 lb weight gain in my 10 year old daughter over a year, I attributed it to the medication. She was only on 1mg daily but it was enough for the weight gain and to start puberty on the early side. Her 2 older sisters 12 year old sister is just starting her body changes but the 10 year old is right there with her. She is very concerned about her body image and her weight gain to the point where it affects her daily routine. I hope this company researches this very common side effect more. I have decided to take her off the intuniv and will keep you posted as to whether she loses the weight.

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    1. Hi, wondering what the outcome was of your daughter?
      My son just stated taking Intuniv and we haven't had the weight issue, yet...but I have been on it for about four days 2mg and I can see and feel a difference in myself. My face is fuller, I feel bloated and noticably larger. Feels like water retention.

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  15. My 9 1/2 year old son is also on intuniv and has definitely gained weight since starting it. So glad to hear other people with the same concerns as us. He has an appointment in November with his neurologist and I am definitely going to talk to him about this!

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  16. My 16 year old son went from the 40 percentile to the 67th percentile in 9 months since the intuniuv. Unfortunately the psych (who we have been trying to change to somebody closer) believes it is the risperdal that is causing the gain. He has been on Risperdal since he was 9 and we have not had that problem. Also, since the weight gain he has had more psychotic behaviors b/c and general instability b/c the risperdal dose is not enough for this new weight.

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  17. I have a Mom to Mom question.

    My son just recently started taking Intuniv and when we increased the dose to 2mg he started having adverse side effects. He was only on the 2mg for 3 or 4 days before we took him back down to 1mg...which seems to do nothing but we are afraid the 2mg is too much. You said you were giving him half of a 3mg pill so your son would get 1.5mg, but we were told not to break the pill in half.

    Did your doctor tell you that you could half it or did you guys just try it. How long have you been doing this and have you noticed any adverse reactions?

    Thanks in advance, this is all very new to us!

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  18. Please someone respond with an answer. We all have kids that started Intuniv and gained massive amounts of weight. How has this been solved? My son can't do the stimulants anymore. And the Intuniv has been great to reduce hyperactivity and impulsivity. I just hate seeing my usually lean 12 year old have a bulging abdominal area. He is very athletic and active, still doesn't over eat, and luckily doesn't have self esteem issues over this. What have people done to help to help?

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  19. My doctor CLAIMS this drug intuniv does not put weight on.
    There are other drugs that can help which DO NOT increase weight.
    I am so disappointed that he could not be honest with me regarding my ADD treatment.
    How can you trust a doctor that cannot be honest with you!!!!!!!
    Maybe find a new doctor like I have

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  20. I am an adult with ADHD just diagnosed. I am also bipolar so I definitely did not want to go the stimulant route. I don't maintain the best lifestyle but for years my weight has been steady. I started Intuniv and have gained ten pounds in 3 weeks. For now I will stick with it. I am a full grown adult and will make the lifestyle adjustments but I can understand the difficulty dealing with this in a child. The weight gain issue is undoubtably real. I wish you all well.

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  21. Our son has been on 2 me intuniv for 3 months and went from a Size 6 to 8. He seems to be gaining in belly and rear. Seems odd to me because he is still pretty active. Baseball starts soon so we will see if he levels out. Intuniv has been a lifesaver and helped him control himself behaviorally. They say A DHD but when I ask him when he sees something like a door knob if his brain then enters a thousand things about the door the door know and how it works,what else happened today, real fast, etc. he says no. Scared to try the stimulants.
    and be careful with a boy taking risperdal it can bring something hormonal to them like breasts to grow abnormally

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  22. Our 8 year old daughter started Metadayte CD (Ridalin) in 2nd grade. She is now finishing 3rd grade. The stimulant gave her a horrible personality when she came down off of it so we switched to Intuniv this year, 2 mg. On the stimulant, she ate no lunch, but double dinner, mostly wanting carbs and did actually gain some weight, but on the Intuniv, it's excelerated. She has a large, bloated abdomen, rounded face, is tired often AND no doctor has told me that one side effect is weight gain. One pharmacist said it does, but it's not in the literature/phamplet. We are taking her off of Intuniv this summer and starting from scratch. I'm so glad we found this site! We have been racking our brains trying to figure out what is happening here - a 15 lb weight gain within 7 months - too much!

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  23. Weight gain is clearly a side effect of Intuniv, and it's listed as one. Go to http://www.rxlist.com/intuniv-drug/patient-images-side-effects.htm, a reputable site. Your psychiatrists are simply ill-informed.

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  24. My nine year old grandson just started taking Intuniv (1 mg). After only a few days, I noticed his face seemed more "full", thus prompting this search re this drug and weight gain. I read the drug insert, and there was no mention of this. No surprise there! Still, I know what I'm seeing. Good to know it's not all in my head. I will never allow him to take stimulants after disasterous side effects with Adderal. He became extremely irritable and angry. However; I don't want him to be a pleasant little boy with a weight problem. A classmate has already called him fat. It's a real shame that the only recourse for a parent is to throw the next drug at the wall and see what sticks. If I could quit working, I would take him off all meds and educate him at home. Very frustrating and very sad.

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  25. My 10 year old grandson has been on Guanfacine for almost 2 years. He is not able to swallow pills and we were told that Intuniv cannot be cut where as the guanfacine can. They are basically the same drug we were told. Anyway his face is puffy and his belly is big and bloated and has had a significant weight gain. He isn't able to take stimulants as he has Tourette's, and aside from the ADHD has Autism. We have been slowly weaning him off the guanfacine to see if his weight goes down. We give Magnesium Taurate (nature's "valium") which was suggested as a vitamin supplement from a Tourette's website.We are going to try the 5htp and B complex through a nutritionist that deals with Autism/ADHD children. We have also done relaxation CD's and massage as well that helps along with a good psychologist. We want to try the "drug free" approach since this is such a crucial time in the social life for self esteem. He is noticing the weight and is feeling self conscious. Our hearts are breaking for him. He has become "moody" and "emotional". We don't know if it is puberty upon us, or discontinuing the Guanfacine. Very frustrating.

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  26. Just an update from my last post on September 10, 2014. My nine year grandson had his 3 month med check-up in January. He had gained 13 pounds since he started taking this "wonder drug" in September. I told the doctor, there was a definite link between the Intunive and increased weight. He began asking me about his diet. Told him, there had been no changes in diet. His favorite snack is an apple. Don't have cookies, donuts etc. in the house. After the discussion about diet, the doctor actually asked if I wanted to increase the dosage to 2 mg. Are you kidding me?!!! I'm just trying to get through the rest of the school year. I'm hoping the weight gain will level off, and I will wean him off of this medication in the summer. I am not planning to put him on anything else, as all that have been tried previously have some kind of negative side effect. There has to be a better way.

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  27. I'm so happy to have found this. I'm curious if there are any updates on any of you. we chose guanfacine to treat my kids ADHD because we were scared of the stimulant effects. we also deal with severe anxiety and SPD. she did great on it for a few months. but she has also gained over 15 pounds on it. she is almost 9 years old. just like some of the other comments, she is mostly puffy in the face and stomach area. to the point where we have out grown the childrens section in the store. she is so tired all the time, despite in crease activity and a strick diet due to also having kidney stones, so she eats very healthy. and she still gains. she is only on 2mg a day of guanfacine. We have a dr. apt in a couple weeks and I have been thinking of asking to try the old Ritalin and see what happens. She needs something, but I cant handle the weight gain and neither can she. She is also scheduled for a sleep study, due to the increase weight. I have been at a loss for months. :(

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  28. My heart goes out to all the parents trying to do what is best for their kids. My son took Tenex and then Intuniv on and off over a two year period while in mostly third grade (parts of second and fourth). He gained a ton of abdominal weight immediately (moving from 50th percentile to 95th) despite a lot of exercise and very healthy eating. This kid swam five times a week, ate no junk food, and suddenly developed a huge gut. We ultimately took him off all medications in fourth grade. He is now starting seventh grade and losing that extra weight, although what is left is still centered around his abdomen. So for us, I am sorry to say, there was no immediate change from going off the meds. I suspect it affected his metabolism and I hope there are no lifelong effects. I recommend Steven Brill's article on Risperdal (on Huffington Post) which talks about how drug companies might downplay a drug's side effects and play up its value, particularly in order to market to children, despite the hard science to the contrary. This weight gain is a very real thing and doctors and parents need to factor it into treatment decisions. Good luck!

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  29. Hello Everyone. This has been very enlightening and confirmed what I've been suspecting. When my son was on intuniv for one year when he was 9, he also gained a lot of weight. He was slender beforehand. I am sorry to say that 2 years off the drug he is still overweight. And what has perplexed me is that the majority of it is around the abdomen although the rest of him is still larger. He eats well and normal amounts but he has this very large gut no matter what. It hasn't seemed normal to me for a child to have a large abdomen. None of the other children I see have this. You usually see this in adults, apple shaped bodies which unfortunately is linked to metabolic related health problems. I agree with what someone else wrote - this drug must fundamentally change metabolism-and it seems permanent as 2 years off have already passed for us. If I could go back I would never have put him on this drug. But I have no choice but to come to peace that I can't change the past. We are trying to keep him as active as possible. He was much more athletic before the Intuniv and more agile and sure of himself physically. Try exercise first and omega 3's before drugs or a different school setting. Homeschooling can be a viable option these days. So many ways to do it these days. Some people have great success with gluten free diets for their kids. I've heard first hand amazing accounts from parents of the difference this can make. My son has been mellower since off the Intuniv as well as way less physically active which I already mentioned. Thanks all for sharing. I couldn't finduch about weight gain and Intuniv on the web 2 years ago but now there is much more written about it. I'd love to hear if any children have been able to return to a normal weight with a normal sized abdomen/gut.

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  30. has anybody explored other options and had there child tested for problems that could cause adhd symptoms. I have been reading if children don't get better after taking adhd medicines it could be another problem. thyroid problems can cause weight gain or loss, irratibility, learning problems, other adhd symptoms, also hormone imbalances like too much or too little testerone, even hitting there heads can cause brain injury and even small strokes that can cause symptoms of adhd. I am in prosses trying to find drs to do these tests instead of giving stimulants. my son had issues the school locked him in concrete room and he hit his front head and back of the head against the wall many times and can not find a dr to do ct or mri scan. I from mn. we even went to childrens hospital of the u of m the guy just wanted to give a stimulants and be done.

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  31. As a doctor, I understand how drug labels are made and if the side effect does not occur at a significant rate in the initial FDA studies it does not make it into the product label. As a doctor, I also look at product labels and tell my patients "this medicine is not causing your side effect" if it is not listed in the label. Yet, I have a son that has gained a significant amount of weight with this medication. To the point where his abdominal obesity is causing insulin resistance and higher cholesterol. Clinically I don't have any suggestions as my son gets hyperactive with the stimulants. However, I do suggest that you report the weight gain to the FDA. You can do this through medwatch. This is how the FDA figures out that there may be side effects of drugs that did not show up in the original clinical trials but occur when a large number of people take the drug in real life. Your reporting will help educate patients and prescribing doctors about potential side effects such as weight gain

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  32. As a doctor, I understand how drug labels are made and if the side effect does not occur at a significant rate in the initial FDA studies it does not make it into the product label. As a doctor, I also look at product labels and tell my patients "this medicine is not causing your side effect" if it is not listed in the label. Yet, I have a son that has gained a significant amount of weight with this medication. To the point where his abdominal obesity is causing insulin resistance and higher cholesterol. Clinically I don't have any suggestions as my son gets hyperactive with the stimulants. However, I do suggest that you report the weight gain to the FDA. You can do this through medwatch. This is how the FDA figures out that there may be side effects of drugs that did not show up in the original clinical trials but occur when a large number of people take the drug in real life. Your reporting will help educate patients and prescribing doctors about potential side effects such as weight gain

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  33. My 10 year old son was just taken off from Intuniv because the side effects were out weighing the benefits. He also has gained 42lbs since the end of August, he is miserable. He has been on Intuniv since March 2015, but there had been a dosage increase last summer. He has felt tired, lethargic, headaches, & constipated since this increase. Prior to this he had always been small & wiry, even before stimulant meds for ADHD.

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  34. I last made an entry on 2/3/2015. I took my grandson off of Intuniv in June 2015. Over the summer, he lost 7 pounds, with no change in diet. The doctor still refused to see any correlation between the medicine and weight gain. However, his activity level increased, and consequently he began having problems at school. I restarted the Intuniv (Guanfacine, 1 mg) in February 2016. At that time, he was wearing size 16 pants. He started gaining weight again. Just bought uniform pants for school. He has now outgrown boys sizes. Had to buy size 34 waist men's pants. Since February 2016, he has gained 21 pounds. Thanks to the doctor for the info on reporting side effects to the FDA. I definitely plan to do so. I am also withdrawing my grandson from school, and enrolling him in an online program. Plan to discontinue Intuniv.

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  35. Hi, 4 years later how's he doing. I developed ADHD as a adult when working in an over stressed environment and Intuniv saved my life. But the weight gain is oppressing. I take it at night and wake up later wanting to eat. It's hard. I literally cook veggies to eat late at night.

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  36. I am an adult placed on guanfacine to take my neurological system down at night to help me sleep through hot flashes. In a month and half, I gained nine pounds!!! Nothing in diet or exercised changed. I'm going off it with hopes this weight goes down . Very depressing

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  37. This sounds like my son. How did everything end up turning out?

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