This selection of quotes abbreviates in many cases what was written. The contributions come from all the continents who have signed.
On statins (10)
ES: Memory loss, couldn’t walk very far. came off statins and back pain went within a few days.
DG: My body has been damaged by the statin drug simvastatin. If I had know about all its potential side effects, I would have stopped taking it earlier and probably would not be suffering as much. Also none of the doctors I consulted attributed my problems to simvastatin.
DG: Currently, I believe drug companies grossly underestimate the number of adverse reactions their drugs produce. Having seen three family members experience the “rare” adverse effects of statins, it is time we forced drug companies to be transparent.
DB: I had a bad reaction to statins that caused cramps in my polio leg. These have gradually faded after months of not taking the drug
TC: I have taken statins and they had a very, very bad effect on me. I believe they are much more dangerous than advertised by drug companies and of little benefit to the majority of users. But how do I find out the real information?
LC: I suffer permanent nerve and muscle damage from Lipitor.
AW: I have permanent muscle damage due to taking Lipitor. I was never informed of possible side effects when I started this drug, and now I am paying the consequences!
FM: Because I have Permanent brain damage to my frontal lobes (loss of short term memory) as a result of taking Statins, my doctors wanted me to continue to take these drugs but I refused.
MP: Three members of my family have been totally destroyed by doctor-prescribed drugs, without any warnings being given. We need to know the complete facts about toxicity and potential consequences.
On Humira (or candidates for Humira) (7)
JF: I have multiple myeloma as a result of taking Humira. Enough said.
LH: I am taking Humira….
TS: I have been taking Humira shots for three years now
MN: My husband takes Humira for AS
BM: As someone who may need to use Humira I want full access to ALL the information available and find it totally unconscionable that a corporation only wants to tell the good news.
KF: I have psoriasis. My Dr keeps pushing medicines like this on me, I refuse to take them, on medicine he prescribed to me was recalled for killing people, I didn’t take it, thank god. I thought the FDA was there to protect us, not be in bed with these companys!
KN: I am patients of crohn’s and I switched to medical cannabis. they want to chain you for your whole life by taking away other choice.
On antidepressants (14)
SS: propylthiouracil sertraline drug combination/interaction once nearly killed me. Had the full adverse effect profile from the clinical trial data for sertraline been made publicly available prior to my hospitalization for acute respiratory failure secondary to diffuse alveolar hemorrhage perhaps permanent damage to my lungs could have been prevented.
CC: Because I have tardive akathisia for 14 months after stopping an ssri, my life in ruined, i am suicidal, if I had known the dangers of this drug I would NEVER have taken it, it was presented to me as an innocent pill.
CG: A particular SSRI nearly made me an alcoholic. Quite a bit of anecdotal evidence points to this. The drug company denies this side effect.
PD: Because I have a heart condition as a result of antidepressant use. With better access to research data, my GP would have been better informed perhaps.
AT: PSSD due to Fluoxetine. It also triggered paranoid psychosis. People should come before profit.
SM: My daughter was prescribed an ssri which wasn’t proven to be safe. She took her own life at 20. My mother was prescribed painkiller for arthritis which led to a multitude of other medications. She is now being treated for dementia with no proof that the medication is effective or safe. The elderly are being targeted for profit. Old age can be blamed for unnecessary suffering and death
WM: I take seroxat and gsk have a lot to answer for
BF: I lost my daughter to suicide from anti-depressants.
TD: My Father took his own life after taking sertraline. I am convinced it pushed him over the edge.
LT: Terrible side effects of an SSRI discontinuation syndrome
RS: I was put on Seroxat / Paxil in 1999 & everytime I went to doctor I said I felt worse. I went from 20mgs to 50mgs & then tried to hang myself – If only I knew then what I know now
PF: Nearly got killed on zoloft
BT: A close friend of mine whose son committed suicide at age 13.
KO’D: Because I suffer from a medical condition I believe brought on as a little-known side effect of an SSRI drug. This needs to be exposed by the media!
Other psych drugs (15)
SML: In 2010, I started what is now a nearly 600 member Facebook support group for those struggling desperately with the long-term effects from the very understudied Benzodiazepines (as Xanax, Klonopin, Ativan & Valium), and according to a Blue Cross/Shield study, 60% of daily users after 4 months experience significant multi-month, sometimes years of CNS recovery. This sectretive bs needs to stop, and stop now!
DW: The effects almost cost me my marriage and have harmed my wife. She’s lucky to have survived them.
TW: I was actually harmed more by improper medication than diagnosis at my place of work. My non functioning for a short period of time due to medication added to the stigma of diagnosis. I switched jobs within a year.
AT: I believe my mother’s death was precipitated by adverse reactions to one or more of the cocktail of prescription medicines she was forced to take.
DS: Please help – I do not want my daughter to die because she is taking a drug she thinks is helping her. What if this was one of your daughters taking these drugs?
MV: My life has been transformed by forceful and harmful drugging and it is important to limit the extents to which corporatism can continue to stifle the voices of myself and others with similar experiences.
KO’H: My daughter suffered horrific medication toxicity and delirium because doctors did not know the risk to a person with CYP450 2D6 deficiency. She suffered iatrogenic drug induced injuries did not recovery to her former self abilities and I struggle to care very impaired daughter without support, respite or medical help
NH: Because of my own struggle with being a psychiatrist failing dangersously to correctly manage my psychotropic medications
OR: I have suffered with depresstion and lost 2 young cousins to suicide because of it too !!
SJ: Been on way to many so-called anti-psychotic drugs that have done me more harm than good. The public need to know the whole truth so they can make an informed decision.
MG: My grandson died by suicide, he had been prescribed a combination of drugs.
ML: Still suffering the effects of forced psychiatric drugging
KS: At 16 I became a lab rat for their greed and now at 24 I’m on a cocktail of meds for m5. ental issues. With medical supervision I still can’t completely get off, all these meds without deadly side effects now. I became a pharmacy tech because I had to learn about drugs myself. I quit when I realized I was enabling people to further kill themselves with the lies and drugs these companies brainwash them with. Now I will find a career to expose all the false ideas and lies society has been brought to not question and just fully believe with such blind trust.
AJP: Was on antipsychotics and other psych drugs in the mid-70’s, weaned off. They caused rapid weight gain, slowed metabolism, possibly lymphedema as well.
GM: I am still dealing with a massive neurological effect from six years of taking benzodiazepines which simply are too profound to be believed…unless you experience it. Or unless it gets reported, documented and publicized. This is not secret information, it’s PUBLIC information
Lost a child (6)
AI: Son Michael got opioids for Crohn’s disease and eventually took his life due to problems caused by addiction. Now a member of the Opioid Reform groups and have testified before Congress.
AY: My daughter took her own life whilst she was taking drugs that can cause suicide ideation as a side effect. It was as a result of an adverse reaction to these drugs. I was stunned when I did some research and stumbled on literature written by experts as to how dangerous they can be. Going through two separate sessions into my daughter’s inquest told me how corrupt the system is. The medical team who supposedly was treating my daughter had absolute no idea and no knowledge as to the dangers surrounding these drugs. All they knew was what the pharmaceutical companies said about their own drugs. The expert witness was biased and later I discovered he is linked to the company that manufactures one of the drugs …
ZH, MH, WY, AH: We unfairly lost a family member (son/brother, committed suicide) due to ignored side effects of a acne drug (Doxy)
HP: When your loved teenager son is dead because of drug side effects, you understand why it is so important to make that data public. It is not a “trade secret”, it is a big crime!
PS: I have to take medication, members of my family had to take medication. My son died from what is a called side effect.
KG: My barely 19 year-old daughter died of a Zoloft-induced “suicide” last February. Her doctor increased the dose of this Black Box drug, over the phone without ever seeing my teen. She died 30 hours after taking the maximum 200mg Zoloft dose legally allowed and that was instructed by the doctor. She was never informed of any risks, black box warnings, possible side effects, etc. We, her parents and caregivers were never even informed by the doctor that this SSRI drug had been increased via phone. Given that the clinical trials for Zoloft showed the dangers of this drug, long before the US and Britain approved it, I believe opening up the clinical trial data to consumers is a matter of life and death. Had we ever been told these drugs increase suicide, my daughter would be alive today.
JF: I suffer permanent disabilities because my doctor and I did not have access to the clinical trials for Levaquin. The FDA reported that the clinical trials for Levaquin were significantly flawed in protocol design and protocol implementation. I was previously healthy, athletic, and had an MBA degree. My life is now ruined.
MK: Levaquin and all quinnilones are lethal I know I am suffering the unknown side effects.
CE: I can hardly walk and My Achilles severed. I was poisoned by Levaquin
LL: ER doctor gave me Levaquin for a simple kidney stone. Now I have 2 torn tendons, anxiety , neuropathy , foggy brain, had surgery, wearing a knee brace and I was never told the side effects before they gave me this in my IV
JE: Destroyed by cipro and statin drugs
Miscellaneous drugs (10)
RJ: I’m a cancer patient, and I had the devil of a time just trying to find out what the survival statistics versus projected side effects of treatment were going to be. This information is not freely given out by doctors
KM: I am signing as the Coordinator of the Campaign for Affordable Trastuzumab. We are trying to push the Government of India to promote the production of biosimilars of trastuzumab and other such designer drugs. Data access is a key issue – by hoarding data related to clinical trials, pharma majors try and block cheaper versions of their blockbuster drugs from entering the market.
JJ: Because I’m on prescription drugs that are already hurting me. My bones are starting to ache, my back is sore every morning regardless of whether I take care of myself or not and I don’t know what side effects I’ll have in the long term? … all along under the guise of saying these drugs are beneficial and will not harm me and if I take them I will not need to go on dialysis or won’t have to worry about my liver dying. But what they won’t tell me is what other bad things could happen to me and how many pills I’ll end up on just to try and combat several other adverse things that will happen to me. How many pills do they take? I bet not much …
CR: I have had nothing but heartache when it comes to prescription drugs. I am still dealing with side effects of FDA approved drugs to treat my FMS/CFS/ME. I nearly committed suicide numerous times, I lost my job, I developed scary & serious co-conditions… None of that was listed in the small print pharmacy lit! So not only am I as sick as I ever was, but now I’m a recovering AD victim as well. Not to mention that my mom died in 2000 due to congested heart failure as a side effect of a drug she was given to treat her MS.
TS: I was seriously harmed by a pharmaceutical drug called ALDARA that actually hid clinical trials from the FDA so it could have the drug approved without any warnings that this potent chemo. cream gets into your bloodstream and destroys your health and does damage to your healthy immune system. This drug was known to kill all healthy cells it could come in contact with and go pass the blood brain barrier and yet it was approved for use on the face for people who had minor sun damaged skin. CRIMINAL
JL: I have been irrepably harmed when drug manufacturer failed to indicate dangerous side effects of the medication dexfenfluramine or Redux
RL: I have had ongoing problems with side effects from PD meds. Specifically, I would like to investigate the incidence of taking levo-dopa short term (4-5 days or up to 2 weeks) with myoclonus. My 10 month ordeal with myoclonus was attributed to a separate neurological condition but the myoclonus appeared after taking levo-cardopa for 4 days in one month; while still experiencing myoclonus I again started taking this drug for about 2 weeks until I decided the med was the cause of the severe & unprecedented whole body tremors (the myoclonus). I have recently been told that as my PD tremors worsen, I will have no choice but to take this drug. I definitely need better information on clinica ltrial data.
GN: My brother, after 7 years, died from rheumatoid arthritis and consequent lung desease. No therapy was successful, May be the free spreading of clinical trial data could better the life quality of these unlucky people.
CH: I take too many meds. Interactions and side effects are something I deal with every day. If I cannot stay informed, how can I manage my own care?
SRS: I am a doctor, I am a moral person, and I have personal experience of hidden negative side-effects of drugs
Drug unknown (14)
Dr PP: We have lost 2 family members due to adverse drug reactions that were known but kept concealed from patients
BS: I have had one child effected by side effects that were not disclosed by the medical industry – and I don’t think innocent lives should be put at risk for profit.
YR:I have suffered permanent damage from a drug
EE: I’ve got own experiences with very dangerous side-effects of a drug an it was a great help to me to have access to clinical data.
WB: I was harmed by a prescribed medication, taken exactly as directed. None of the risks I experienced were told to me, nor published.
FR: This is important to me because I have been seriously affected by a medication which I would have taken in the first place if I had been aware of the possible long term side effects.
AC: I was overdruged by prescription medicine! These meds ruined my life and now I am trying to put it back together!!! Doctors are so quick to give out pills and this is not right!
DT: “there is no such thing as a free lunch” – comment by local doctor when we were concerned at severe side effects our child experienced on a certain medication . At least we had information that listed the side effects and were able to independently complain about the drug . our Doctor would not do this
TM: First hand experience of life threatening drug toxicity with insufficient Physician awareness of Scale of potential toxicity.
MD: Pharmaceutical drugs destroyed my health and my life!
KO: I have been severely damaged by prescription medications. My life has been destroyed by doctor prescribed medication taken just as prescribed.
MK-J: Personal experience with serious side effects brought on by perscribed medications.
RN: I feel very strongly about this. i was lied to about medication i was given and became very sick