Advocacy group symptoms and conditions

My teenage daughter was taking generic Wellbutrin (manufactured by Watson pharmaceuticals) 150 mg. daily for about 3 weeks or so and started having serious hair loss on the top of her head. The prescribing psychiatrist told her to stop the medication and after about 2 weeks, the hair loss has stopped almost completely. I have read a number of blogs including this one that indicate that hair loss is a side effect yet the Wellbutrin trials only listed hair loss as a side effect for less than 1% of patients. Given the U.S. Supreme court ruling today that says that even if the FDA has approved a medication, a pharmaceutical company is still responsible for fully reporting side effects and can in fact be sued in individual states if they do not provide sufficient warning, I would be interested in hearing ideas of how we can put more pressure on the manufacturers of Wellbutrin and its generic equivalent so that they give better warning of this side effect.

So happy to find this site. I never noticed My son never had an eye tick until last month, ironically we started giving him Singular on a daily basis about the same time. My son just turned two and is has also been waking up screaming 3 times every night. Have others reported this same problem...also he is on Pulmicort too, have you read that it is linked to Glaucoma and Cataracts? Do you think that this could be causing the tick? Please HELP! I want a parent's opinion before bringing this up to the doctor...they are so quick to jump to more drugs it makes me sick! Thank you! Any other children with eye "ticks" like really quick consecutive blinks?

My 18 yr old daughter has been on singulair for several years and has complained this week of numbness in her feet and toes. I have told her to stop the drug. Is this a reversible side effect? Does anyone know if there is anything else to do?

I am a loving mother of a 5 1/2 year old boy. He has been on Singulair for over 3 years. In this past 3 years my son has suffered in an unspeakable amount. He came down with Rota Virus and was hospitalized at 2. He then came in contact with Pneumonia in the hospital while he was there. They automatically put him on Singulair, Zyrtec, Prednisone, and antibiotics to treat the pneumonia. Since that day, my son has gone though more tests than I have in my entire life. He has had asthma, sinusitis, leg cramping ( to the point he cannot walk for 2 years), IBS, Acid reflux,(they gave him laxatives for a year that made things worse and addicted to them also), stomach pain, constipation and diarrhea back and forth. He also got Erythema Mulitforme TWICE, while on this drug. All of which the doctors said could NOT be caused by Singulair. He has had several Upper GI's and CT scans. Along with Barium enemas, several hundreds of blood tests, and many many pokes and prodded that were not necessary. All since he has been on Singulair. He now has frequent bathroom trips, depression, confusion, and anger outbursts. He also has to go to the restroom every 5 minutes. He has had genital swelling, and many other aches and pains. None of which his "doctor" ever said could be a result of Singulair. I am 100% sure it was!!!! He currently has anxiety and emotional sporadic issues causing problems in school The teachers and counselors say that it is so strange because there is no TRIGGER and the outbursts are completely inconsistent. His preschool teacher and director are sure he has ADHD. Well, we had him tested and he does not have any part of it. He has no learning disability what-so-ever. So that brought me back to square one. He is in a positive loving enviroment. How could he be depressed and want to hurt everyone around him? He cannot sit still. He cries and says he is 'stupid" and "can't think" like the other boys. He has nightmares and cannot sleep alone. He is scared of everyone and everything. So, as I sit here crying, I realized that this has all been a reaction of his "medicine" Singulair. He never should have gone through all of those painful tests, only to prove they couldn't find anything. So many treatments and sound full advice speeches from his doctors. How could they be so naive and selfish in the life of my son?

When I called my pediatrician of 5 years, she told me that " parents that have children with behavioral problems will LOOK for something to blame their problems on." She also said "drug companies only put side effects on their labels to PROTECT the drug companies. (as she laughed at me) They are not always valid". Then she said "if you take you child off of Singulair you will be playing Russian Roulette in his life." Then she said that all children around 5 or 6 go though this emotional time in their lives." She told me that if I take my child off of Singulair that she would no longer be a part of his health regimen for his asthma. She told me to see a Pulmonologist for further treatment.
Who is paying who? This is my son's life???????? I decided to go with my mother-gut instinct and get him off of this medicine. No matter what. He has been a different person since. He is currently going though a lot of side effects and withdrawals (leg pain, insomnia, hic-ups, emotional distress) but every day is getting better. How can the drug companies say that this is a "wonder drug?" There are more reported side effected patients then clinical studied patients! How can a "medication" that stimulates the brain not be connected to other problems? This "medication" interferes with the bio synthesis and action of LTs and has been marketed as NOVEL medication against asthma and allergic rhinitis. Who the hell is playing God here??? The pocket books of Merck or our over PAID "doctors?" Who pays the price? Our children? Or us. Thank god I found this before it was too late. I would not be able to withstand the pain of losing my son due to their lack of scientific evidence. They are lucky I am one of the smart ones. I will not settle for less than Justice for the drug companies and their paid "doctors?" You all end up in the same place. HELL

There are 18 million people on this drug. Most of them are children. Please save a life if not your own child's life. Thank You

This is just amazing to me. My son was prescribed singulair for asthma when he was 8, he is 19 now. I only kept my son on this medication for about 4 weeks. I noticed a HUGE change in his personality, defiant and very fired up. I took him off, because there was just no talking to him. It made a difference, he was back to normal. I said something to his doctor, and he didn't know what to think, he said that the drug shouldn't alter his personality, it's an asthma medicine. I'm glad i listened to my gut instinct and took him off. My doctor just prescribed singulair to me for severe allergies and i wanted to see what the side effects where. I had NO idea i would see the side effect, that i knew my son was having 10 years ago, when this medicine first came out. I am speechless...

I have founded an advocacy group called Parents United for Pharmaceutical Safety and Accountability. The activities of this group will include supporting Kate and Dave Miller's efforts to initiate change in the adverse event reporting system and failed system of updated drug info notification to physicians and pharmacies, and to educate the public and motivate them to demand change too. Another activity will be to educate the public about the dangers of Singulair and how to spot adverse reactions. And finally, the biggie: putting pressure on the FDA to AT LEAST "black box" Singulair.

I personally wonder how many people out there have experienced adverse reactions to Singulair. At some point, if the FDA lets us down, I want the group to conduct its own study to determine this and maybe identify new adverse reaction?

Hopefully the website will go live next week. Anyone who wants to volunteer or give input is invited to sign up via a private message to me at this site. If you provide your email address I will contact you when the site goes live. If you would like to speak to me directly, send me your phone number and I will call you.

I have already contacted some of you directly, and if I have not yet gotten back to you, forgive me, I will.

Thanks in advance for any support you can give!

Jenna M.

Class-Action Lawsuit Challenges Pfizer's DTC Ad Claim of Lipitor's Effectiveness in Reducing Cholesterol Levels, Wall Street Journal Reports
29 Sep 2005

A lawsuit filed by consumer advocates in U.S. District Court in Boston alleges that Pfizer marketed the cholesterol drug Lipitor to women and the elderly without proof that Lipitor reduces the risk of heart disease in those groups, the Wall Street Journal reports. The plaintiffs -- which include advocacy group Health Care for All and health plans for a New Jersey Teamsters union local, a Brooklyn woman and an elderly Massachusetts man -- allege that Pfizer's sales and marketing campaigns focused on cholesterol reduction and suggested that the medication protects against heart disease. However, there is a lack of proof that Lipitor's effect on cholesterol protects against heart attacks and strokes in women and the elderly with no prior history of the diseases, according to the suit. It also alleges that the company's marketing campaigns violated state consumer protection laws against unfair and deceptive trade practices. The plaintiffs state that although studies show the medication is helpful in lowering cholesterol in men with a high risk of cardiovascular disease, no such proof exists for women or the elderly. The groups are seeking compensation for women and the elderly who paid for Lipitor and insurance companies that paid for the medication on their behalf. A Pfizer spokesperson declined to comment on the suit, saying that the company had not been served, the Journal reports (Hensley, Wall Street Journal, 9/29).