Ala symptoms and conditions

I have been on prednisone since I was two years old (I am now sixteen) because I have Autoimmune Hepatitis IIa. I would like to point out that there is still a life worth living being on prednisone, maybe I say this because I do not know life without it, but at least we're alive! Last year I had a flare up of the AIH and had to 6x my dose of prednisone. It sent me into a spiraling depression of constant sleep, crying, hopelessness etc....but I made it through. Just PLEASE keep hope that things would get better, because I know what it's like being on the dreaded drug better than most.

Lisinopril causes burning and tingling sensations in your feet (peripheral neuropathy). The neurologist insists that the Lisinopril simply "unmasked" a hidden glucose problem. My primary physician does not understand what that means. I have stopped taking the drug. It has been over a year and the side effects remain. I tried 10 sessions of acupuncture which seemed to alleviate some of the pain & discomfort in my heels and middle of the feet. I have started a treatment of folic acid, B1 & B12. I also recommend diet & exercise. I was prescribed gapapentin by the neurologist; it alleviates the side effects but does "cure" it.

My Daughter has been the same way .. she had the headaches, stomach pain, very depressed .. she has missed 6 months of school she was afraid to go to school, shopping, and being left alone.. I have put her on medication for her depression, and anxiety . i have her in therapy for this... she is not the same child i just want my beautiful daughter back..We are having a hard time with her from school to he social life.. and from her tring to kill herself.. My daughter is only 13 years old...I think someone needs to pay for this... please there must be help out there...How long must this go on before people (FDA, Merck, ALA, etc.) will take this seriously?!?!?!?!
I want my beautiful katelynn back........................
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I wanted to post an update on my contact with the Congresswoman's office , which I am communicating with.The ALA study we were all so upset with,was originally done by Merck,what a surprise!The FDA did contact me and state that they look at all the available data and have even reviewed this site.I am reiterating how important it is to contact your representative in Congress,they are trying to form a coalition for better notification practices.Our Congresswoman Kirsten Gillibrand is working with other members and looking for more to contact her office, that have families they represent.Also the Parents United for Pharmaceutical Safety and Accountability group that Jenna has formed is a very important tool.I will hand deliver it to Washington if we get enough people to get involved.The FDA is taking more time than we would all like but,if they have hired more staff and hopefully that alone will expedite this investigation along.I hope the awareness level rises when WBZT out of Boston airs our stories.Again Please Make a nuisance out of yourself with your Congress Rep. it will help to make it a law to expedite important information on added side effects to the doctors and pharmacist .All of us need to come togehter as one voice and it will make a stronger statement.When the advocacy website is up and running,we can all help by taking the time to contact those who have posted to sign up and get involved.The importance of this was stressed to me by the Congresswoman's staff.I also walked in a Suicide Awareness and Prevention walk over the weekend,I took the opportunity to hand out flyers I printed. They contained information on the serious side effects such as suicidal thoughts and actions, so people that may have had a loved one die from suicide and taking SINGULAIR could make the connection.Many have not made the connection and they are unaware of the link!!!!!!!
I am looking for all avenues to travel, any ideas are appreciated.I have scanned a print out of a sheet that is an alert to post in schools and emailed it to Jenna,if you would like a copy send me a private email and your email address.A family member worked with the School nurse in her hometown and made this a communication tool.You can start at that level and just white out the name of the town and the nurse add your own or nothing just the alert.We went to all the local schools and there is no liability it just states the facts,good for the bulletin board in community centers also!Do what you can to help,it is grass roots efforts that brought this country to what it is now.Even through disappointments we still have the freedom to try to make change.Kate M.

I too filed a report with the FDA after I ended up in the hospital for 3 days after being on Singulair for 8 days. I never heard a word from them...never wanted to ask any questions, or follow up. This is crazy! People are having more than just "side effects" from this poison, and based upon the number of complaints here on this site, it's not just a few of us. I don't see how this can continue to go on. It is so frustrating...people are getting hurt, and dying from this stuff. How long must this go on before people (FDA, Merck, ALA, etc.) will take this seriously?!?!?!?!

Hey to All.
I know that the ALA study got everyone upset and I am happy we all emailed her.We all pretty much got the same response from Heather,defending the study and the integrity of the results.If only this investigation would conclude!
The Merck company contacted our Senator and indicated there was a conclusion and then ,they never got back to her before the weekend.I will have news early in the week.Please everyone just keep on voicing your concerns by reaching out any way you can.Sometimes it seems unbearable and I have to take a break with the communications on this website but,I continue my communication with my local contacts and the FDA.
I would love quick results and everyone would love this to get the publicity this story deserves but,if you look at how far we have come getting attention focused on this drug it is amazing.
This website has been here for years and people have complained and nothing has been accomplished until now.Our system is so broken it will take time to fix it.Drugs get approved everyday and when they are put out for multi use,the population benefit -risk ratio changes and there is little oversight on this matter.
The problem is much bigger than just notification of updated side effects,which indeed is why our son died from this drug.It is reporting adverse events to the FDA and the drug company and following up on your report.We can only fight within the system of the government that is in place at the moment and push for change to take place in there programs.
This is what has take place as of this year,The FDA's new 'Safe Use "iniative(which when it gets further developed will increase our partnerships with physicians as well as patients) and the July 2008 AAM report" Education in Safe and Effective Prescribing Practices" which aims to address the education of the next generation of physicians on how to best use medicines.This may help in notification practices and over prescribing but, we want the drug companies to lose the unprecedented control over the clinical research and and evaluation of there own drugs.What other company in the USA, gets to self regulate.Change will come ,we have asked for accountability by having a signature exchange when new and updated side effects are found.Full disclosure of all reported adverse events to doctors from the company representatives,with signature required upon full understanding of the benefit -risk ratio change. A prescriber should know all the good and the bad about a medicine they have chosen to dispense,if not then they should not be able to dispense it.If we were not knowledgeable about selling mushrooms and we sold the poisonous ones ,because we did not take the time it would take to educate ourselves about them,would we not be legally responsible for our actions.
Accountability is what we are asking for and maybe the candyland doctor prescribing practices would stop.They seem to ,not have a responsibility to their patients and the company has no responsibility to the prescribers,so who is responsible for our safety?
I will keep fighting for real change and all you people must do the same ,make an appointment with your representatives and have them contact our Congress representative of NY,maybe with enough onboard we can get the legislation we need to put a law in place for proper notification practices.Kirsten E. Gillibrand Member of the US House of Representatives 120 Cannon House Office Builing Washington, D.C. 20515
This is how change is made ,if you want to help please go forward and do this and don't stop until they listen.I am always willing to do whatever I can,it is physically exhausting and sometimes I just have to step away but, my daily review of this site has not stopped and my fight will continue.Dave and I sit here and our hearts just break for all but, we need people to push their Representatives they do work for the people just remind them of that.Any one with questions or that wants to communicate via private email just ask for my email address or phone number or leave me yours and a time and I will be sure to contact you,Kate M.

I'm going to be interviewed about my family's horrific experience with Singulair on Monday by a CBS news affiliate out of Boston. I am going to try and blow the lid off this story and will hopefully be posting my interview on youtube. This has gotten so ridiculous with the ALA "study" ....and I never wanted to go there....but it almost to the point of conspiracy. These people are just downright creepy!!!!!!!!!!

Welcome a board singulairsurvivor. I received back an email from the woman at the lung association,she was of course sorry for our experiancr,and went on to say the scientist that reviewed the data were some of the best,and the association has no ties to any product.then as i am watching the updates on the hurricanes,i am inendated with singulair commercials as once again it is allergy season,so what a windfall for Merck that this article came out this month and not next....Coincidense i think not shame shame shame on you.To all those unsuspecting people about to get their prescription .i am sorry

decomposition of lisinopril in acidic medium so narrow absorption window.