User Reviews for Orap to treat Tourette's Syndrome
The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
Reviews for Orap
"My son has just started 1mg of orap a week ago with no improvement. Waiting to go up to 2mg after another week. He has tried lots of meds and nothing works orap is our last hope but I'm worried this is not working also. Should we see some improvement yet"
"I am glad to share with you that this drug has saved my life, I used to tic a lot but after using 2mg of Orap 90% of my tics are gone. Please start with low dose at first so that your body can get used to it."
"I was diagnosed at 18 but has had mild tics since I was about 5. They got much more intense as I got older and I was first put on a few other drugs but none really helped. I'm on 8mg of orap a day and it helps for the most part until I'm in public or a stressful situation but has generally helped. I started getting muscle spasms as a side effect but was put in benzotropine for them and they've gone away now. It makes me a bit drowsy and I had dry mouth for the first few weeks but with water and coffee I'm able to function fairly normally! My tics are still obvious but improving. Overall it's been helpful."
"I was 7 yrs old when I starting with tics & when I was 12 I was diagnosed with mild Tourette Syndrome. I gained 100lbs plus during the 15 yrs that I was on Orap, I developed medicine induced anxiety, cotton mouth, fatique/sleeping all the time, my menstrual cycles were messed up, my thought process & decision making was not balanced, I developed temp. infertility, my prolactin levels were elevated dangerously high. I never should of been on Orap to begin with, Orap is for severe cases of Tourettes after ever other medicine has been tried..Orap is a last resort at a very low dosage...Please ...Please proceed with caution if you do choose to take this medicine. At age 44, I am blessed to be here today to type the rating of this medicine."
"My son was diagnosed with Tourette syndrome at the age of 6 and he is now 12. He has taken everything clonidine, klonipin, seizure meds, topmax, haloperidol, and a host of other meds at first the Orap was a God send because he went from a lot of meds to only 3 meds. His doctor had a hard time getting approval at first because he wasn't quite 10 yet, but after the approval, for the first 6 months it worked well, my son began to gain a little weight but it was a good thing because he lost so much with the other meds but after that first 6 months his tics began to increase."
"I was diagnosed with Tourette's Syndrome when I was 11 years old. I had tried a couple of medications before this one that didn't help too much. Although this medication helped tremendously, the side effects were too much. My appetite greatly increased on top of gaining weight from the medication itself. I had no energy and had gained 100 pounds within a year. I am now 25 years old and this medication changed my relationship with food. I recently had bypass surgery due to overeating throughout my life as well as an inability to lose enough weight trying methods like healthy diet and exercise. Although this medication is helpful treating the tics, please use with caution."
"I'm a 65 year old female who has just been diagnosed with Tourette's Syndrome. Only been on medication 1 week very low dose. I've already gained weight and experienced dull mind also energizing. Orap scares me for my age. My tic is a throaty burping sound. This whole experience is rare and unbelievable. My tic is slowing somewhat."
"I was diagnosed at the age of 14 with Tourette's Syndrome, and I am now 15. Before Orap I had a severe tic to my right side that would happen usually when I was stressed, or something was out of place, but sometimes at random. Though this medicine has helped me tremendously, I can say I am much better off without it. The side effects were just too much. I became void of any energy, and would stay in bed for more than 12 hours a day. I also started to experience syncope. I decided to stop taking Orap for a couple of weeks to see if the side effects would cease. I felt mildly better, but I developed a tic similar to what you would see in a person with Tardive Dyskinesia. I'm going back to my doctor soon to discuss what has been going on."
"I took Orap in my early 20s. My tics were minimal and I only needed Clonidine in my early 30s. I'm having a bout right now and am so scared to take the Orap again due to the side effects I've read up on. Don't know if I should just wait it out or what. I've been stuck in my hose since the end if January. Can't take the stares."
"My son was diagnosed with Tourettes and he is 10yrs old. The medicine has helped a little with his tics but still does some. His anger is getting worse while on this medication and has gained alot of weight in the half a year he has been on this medication. "
"My experience with Orap was horrible. It was like taking speed for me. I was so Hyper I couldn't sit still long enough to eat a bowl of beans, I had to be moving constantly. I told the doctor how they affected me. He said Orap does that to some people so he put me back on my old meds that didn't work. Klonopin and Haldol. "
"It is the only medication that has worked for me. Others such tenex and risperdal made my tics increase 10 fold."
"I am an 18 year old male. I fond out I had Tourette's Syndrome when I was 15 and I was put on Orap. Orap helped me, my girlfriend says my tics aren't that bad."
"I am a 41 year old male who was diagnosed with TS when I was 12. I had medium severity and was on Haldol for 3 years, I was a zombie. I changed to Orap and it was like I was born again. I still take it after all these years, 2 mg per day and have minimal to no tics noticeable. Teva assistance program gives free medication to those who are eligible, I am on this program. "
"I have had Tourette's since I was nine years old. I remember blinking non stop and knowing that something was wrong. I am now 30 and have been on Risperdal, Haldol, and Orap. The Orap is the only thing that works without any harsh side effects. Mostly I have facial and vocal tics that get fairly severe under stress. The Orap eliminates all but the most severe tics. I am extremely thankful for Orap and how it has helped make my life a little more normal. I also suffer from anxiety and OCD."
"I'm a 38 year old man who has had Tourette's from the age of 8. The only medicine I have found to control my tics almost 100% is Orap. When I take the medication my tics are almost none. I am very lucky not to have the speech tics. Mine are mostly ticks in my eyes and face."
"I was diagnosed with a "medium' case of Tourettes Syndrome when I was seven years old. I'm now 23, and in the times before I started Orap about 4 years ago I was on almost every single medication that can be used for Tourettes. In addition to the tics, I have severe anxiety/depression problems, so it complicates matters. I've seen many psychiatrists, and they have all done their best, but in the end, it really came down to finding the right combination of drugs. The Orap is good. There is no cure for Tourettes, yet, but I have faith they will find it. I believe very strongly that medication is not the only way to treat it. Sleep, diet and exercise are all important. But of all the tic medicines, Orap helps the most."
Learn more about Tourette's Syndrome
ICD-10 CM Clinical Codes (External)
More about Orap (pimozide)
- Side Effects
- During Pregnancy or Breastfeeding
- Dosage Information
- Drug Images
- Drug Interactions
- Compare Alternatives
- En Español
- Generic Availability
- Drug class: miscellaneous antipsychotic agents
- FDA Alerts (2)