Editorial Note: Following a redesign of the website in 2015, the Symptoms on Stopping Zone mentioned in this article now works differently. You can search for withdrawal related side effects in the Drugs A-Z section. Side effects can be reported using the main “Report a Side Effect” function.
Free online tool to research and report prescription drug side effects on withdrawal
Toronto, Canada — RxISK.org, the first free, independent website for researching and reporting prescription drug side effects, has added a Symptoms on Stopping (SoS) Zone to highlight and collect data on the side effects patients can experience when stopping a medication.
“While many of us associate withdrawal with stopping things like cigarettes, heroin, or sleeping pills, we may not realize that commonly used prescription drugs for conditions such as high blood pressure, cholesterol, indigestion, and depression have withdrawal effects that can range from mild rebound symptoms to life-threatening crises”, says RxISK Chief Medical Officer Dr. Dee Mangin.
Users can report their experience and receive a personalized RxISK Report that assesses whether their symptoms are linked to stopping their medication, which they can take to their doctor or pharmacist.
Dr. Dee Mangin says, “For example, when stopping a proton-pump inhibitor like Losec for indigestion, there is a rebound of acid production in the stomach that can cause indigestion far worse than the original symptoms. This is just a rebound effect and will settle; however, it can be mistaken to mean that the patient still needs the drug. Similarly, stopping diuretics abruptly can cause rebound edema. And stopping some antidepressants can cause such severe physical and psychological withdrawal effects that it is impossible for the person to ever stop the drug completely.”
RxISK CEO Dr. David Healy says, “Withdrawal symptoms from prescription drugs can persist for years. Symptoms can range from mild and easily managed to horrifying and life-changing disability.”
Healy believes every patient should have this information before he or she makes the decision to start a medication. “We are very good at starting drugs but not as good at stopping them. This is why we encourage people to go to RxISK and look up a drug before filling their scrip. If you have concerns, you can then have a more informed conversation with your doctor or pharmacist before you start something you may not be able to stop easily or quickly.”
Dr. Healy says this is especially important for women of child-bearing age who may not have the luxury of time to successfully wean themselves off a prescription drug before trying to start a family. “In an age where many women will abstain from alcohol, nicotine, caffeine, soft cheeses, or uncooked meats if they are thinking about becoming pregnant, would they consent to taking a prescription drug if they knew the risk of birth defects or of becoming hooked?”
Stopping a medication can also cause positive effects. Stopping can make you aware of how much better you feel off a drug that was causing problems you didn’t recognize at the time. This is a powerful way to uncover drug side effects.
Dr. Mangin says that for some patients, especially older patients, the burden of the side effects of multiple medications can be greater than that of any illness they are designed to treat. In these cases, a considered withdrawal or dose reduction (sometimes called de-prescribing) can reduce death and illness from drug side effects and interactions.
Dr. Healy says the main problem is that there is precious little data on how long withdrawal symptoms can last and how best to treat [?] them. “We need people to report their experiences so that there is better information to guide patients and doctors — so that symptoms on stopping medications are not mistaken for other things, like a re-emergence of the underlying disorder or even a new illness.
“But we’ll only know this if patients and doctors report what is happening. This is why we’ve created the Symptoms on Stopping Zone — to provide an easy way to research prescription drug withdrawal symptoms and report any side effects.”
RxISK — your megaphone to help change drug safety
RxISK.org allows users to enter the name of a prescription drug and see the side effects that have been reported to the FDA since 2004, for more than 35,000 drug names from 103 countries. The data is presented in tables, tag clouds, heat maps, and interactive graphs, showing what’s happening with other people taking the same drug around the world.
Users can then select the effect(s) they are experiencing and click on Report a Drug Side Effect to complete a report. They get a personalized RxISK Report linking their symptoms and meds, which they can take to their doctor or pharmacist to facilitate a better treatment conversation. This will also add their anonymized experience to the RxISK database so that others can benefit from this information.
About Data Based Medicine Global Ltd.
RxISK.org is owned and operated by Data Based Medicine Global Ltd. (DBM). DBM’s founders have international reputations in early drug-side-effect detection and risk mitigation, pharmacovigilance, and patient-centered care. Although drug side effects are known to be a leading cause of death and disability, less than 5% of serious drug side effects are reported. DBM’s mission is to capture this missing data directly from patients through RxISK’s free drug side effect reporting tool and use this data to help make medicines safer for all of us.
Johanna says
When drugs are addictive and doctors don’t realize it, they may have no idea who they’re prescribing to, and why. There was a letter in the British Medical Journal from a GP at a womens prison who had found prisoners craving quetiapine, gabapentin, pregabalin and mirtazapine along with various opiate painkillers — all prescribed by doctors for “legitimate” medical problems the women sometimes did not actually have. (This GP wondered how so many young women could have “intractable back pain.”)
Quetiapine (Seroquel) dependence is becoming common in US prisons as well, thanks to Astra Zeneca’s aggressive marketing of the stuff to prison healthcare systems. There are stories of prisoners in the LA county jail learning to fake schizophrenia so they can get it (just as more and more college kids are learning to recite the symptoms of ADHD so they can get an Adderall script). So now we have a Seroquel black market in many cities driven by users just released from prison … or the military.
I know many people given these drugs for pain control or insomnia find the grogginess they can cause really unpleasant. But in prison, anxiety and boredom can both be so intense that being able to sleep 10-12 hours a day seems like a blessing. Then again, once they’re released and the drug supply dries up, many of these folks probably go into withdrawal, feeling distressed and “wired.” They could be buying them on the street more to stave off withdrawal than to get some really desirable high.
Thanks for opening up this channel for people to tell their stories! Maybe we will hear the rest of this story from someone who has been there.
annie says
How I wish the Rxisk Tool SOS had been around when I was taken off an ssri abruptedly. My gp came at me like a battering ram telling me to pull myself together after a week off Seroxat and I was sitting on my bed hyperventilating so badly with zaps going off in my head and I didn’t know what had hit me so hard – the six relentless weeks of an horrendous withdrawal sobbing, crying, unable to breathe, suffocating fatigue, arms and legs twitching unstoppably and a feeling of panic and distress unknown to humankind – or the unspeakable cruelty of a woman who was blind and who took the route of pushing me beyond my own endurance with carping criticism and, in the end, the near fatal demise of her patient.
Battered like this to the point of death is so psychologically damaging, when the battering does not ever stop and the only option left is to crawl away and ‘left for dead’ with more post traumatic stress than is almost possible to bear and the hubris from the authoritative figure goes on.
I would not like anyone to have gone through this journey of sheer cruelty because GSK informed the doctor that their drug was safe….
If I had been a victim of surviving a tsunami or the survivor of a plane crash or bomb, I am quite sure the world of caring would have decided I needed some cbt or compassion.
To be battered like this to the point of death, with no recourse, is the most frustrating, unfair situation that could ever be envisaged.
This is why Rxisk SOS is so vital today, more than ever before.
annie says
How I wish the Rxisk Tool SOS had been around when I was taken off an ssri abruptedly. My gp came at me like a battering ram telling me to pull myself together after a week off Seroxat and I was sitting on my bed hyperventilating so badly with zaps going off in my head and I didn’t know what had hit me so hard – the six relentless weeks of an horrendous withdrawal sobbing, crying, unable to breathe, suffocating fatigue, arms and legs twitching unstoppably and a feeling of panic and distress unknown to humankind – or the unspeakable cruelty of a woman who was blind and who took the route of pushing me beyond my own endurance with carping criticism and, in the end, the near fatal demise of her patient.
Battered like this to the point of death is so psychologically damaging, when the battering does not ever stop and the only option left is to crawl away and ‘left for dead’ with more post traumatic stress than is almost possible to bear and the hubris from the authoritative figure goes on.
I would not like anyone to have gone through this journey of sheer cruelty because GSK informed the doctor that their drug was safe….
If I had been a victim of surviving a tsunami or the survivor of a plane crash or bomb, I am quite sure the world of caring would have decided I needed some cbt or compassion.
To be battered like this to the point of death, with no recourse, is the most frustrating, unfair situation that could ever be envisaged.
This is why Rxisk SOS is so vital today, more than ever before.
Has my brief description here, become the ‘normal’ way to die?
Ruth says
I totally Agree with you Annie, my doctor did not have a clue either. The suffering I had was relentless and many years later I still suffer. There is no help available as no one believes what is happening and no compassion. Even family members think you are making it up.Its like a groundhog day of hell and no way out.
Johanna says
Annie, I think you hit the nail on the head. These “symptoms on stopping” are the MOST dangerous when you don’t realize that what is happening to you is a drug side effect! (Or when your doctor either doesn’t know or refuses to admit that it is.) It’s especially true with suicidal thoughts and other alarming mental side effects. Knowledge, pure and simple, can be the thing that saves your life.
Even when the symptoms are in your heart or stomach instead of your mind, knowledge can save you from a world of hurt. Not to mention a whole lot of expensive, invasive tests and extra drugs from doctors who are barking up the wrong tree.
annie says
It was illuminating for me to read The Honest Apothecary interview with Professor Healy.
It was the hospital pharmacist who devised the year-long programme of weaning off Seroxat with small amounts of Paroxetine liquid, taken by syringe.
I have her reduction programme in front of me now – Month 1 to Month 11. This is 2003.
Starting at 30 mls (tabs + liquid) reducing to 2.5 mls (liquid only). It more or less worked.
The gp and the psychiatrist, at this time, were still banging on about my ‘behavioural problems’.
Was there no end to the total lack of communication between all parties….that syrup reduction technique saved my life, which had all but gone the year before, 2002; all down to the pharmacist….the rest of it is truly appalling ‘behavioural problems’ from my gp and prescriber.
It takes a bit of work for the patient to work out the mystery and become illuminated.
Thanks for providing The Honest Apothecary for us to read.
Gill says
Rxisk needs to become an automatic necessary part of administrative procedure in the medical profession- with GPs, Doctors, consultants etc.
There is a definite loop hole in the system- without Rxisk who else would be collecting vital data and helping people with all this ?
Tex Hooper says
I like what you said about making sure your prescription is tailored to your age and is given by a doctor. I need to get a consultant to help me with my depression meds. I want to ween off of them.